It usually happens with those who only know us casually. After spending some time with our family, the question is often posed "So what is his diagnosis." In other words, they now something is a little different about our son but they can't definitively say what that difference is and they are seeking some clarity. I'm not offended by such questions. I just don't know how to respond. More often than not, I reply "I don't know." or "He has global developmental delays." The reality is our son has only minor special needs but taken all together, they are quite frustrating to deal with.
Our son has been diagnosed with developmental motor coordination disorder, congenital deformity of the knee joint, congenital pes planus, fluency disorder, expressive language disorder, hypotonia, tall stature (yes, an actual diagnosis???), and attention deficient disorder. In other words, they don't really know why he is the way he is. They are describing his symptoms, his behaviors, and his physicality but they don't have a "syndrome" or specific disorder that he falls into. This has been a source of serious frustration for me. If I had a specific diagnosis, I might be able to research it, work with it, and attempt to make it better. Instead, I'm left with this list of symptoms that presented together can be deceptively mild or overwhelmingly difficult depending on the day.
The diagnosis that I really try not to mention to people is attention deficit disorder. In the United States, it seems that every other boy on the street has been diagnosed with this disorder. People don't really seem to take it seriously as a result. Unless your child is twitching and jittering, many people think you are looking for an excuse for your child's misbehavior or failure to succeed. The reality is his therapists and neurologist have been trying to lead me to that diagnosis for a long time. I have been extremely resistant. I work in education. I know what an ADD diagnosis means. That kid is trouble. He's going to disrupt your class and take away time from your other students. His parents don't have any control over him and need someone to blame for their lack of parenting skills. Sure, another boy with ADD.
Our oldest son is extremely active, both verbally and physically. He never sits still. If he does, his leg is jittering. He talks all the time. Since he was little, we have had him in sports and activities to help burn off his excess energy. We keep him busy physically and mentally to help wear him out. Since birth, he hasn't slept well because he can't lay still and actually sleep. Is he ADD? No. I'd say no. In school, he has no trouble sitting still. He can focus on the teacher, the lessons, and the rules. His grades are amazing. He's just a high energy kid.
Conversely, our youngest son is not a bundle of nervous energy. He tends to zone out and fixate on things. When he does go into a manic mode, it is very hard to pull him out of it. His energy and movement at those times seems very erratic and uncontrolled. In class, he has trouble sitting in his seat. He wants to jump up and move impulsively on a whim. If he has something to say, he blurts it out impulsively without any thought to wait his turn or ask for permission. While reading, his head is turned to the page but his eyes are darting everywhere except for the page he's supposed to be reading. If there is something in front of him that interests him, it is nearly impossible to keep him from touching it or holding it even if told explicitly not to. He responds to high energy and over-stimulating circumstances by increasing his energy level to match that of the current activity. Unfortunately, he has a very difficult time bringing his level of energy back to what it should be without an explosive episode. Is he ADD? It took me a LONG time to admit it but yes. I think he is.
An ADD diagnosis is one of those diagnosis that seems to come with a lot of judgment from those in the community. I've been told that our son doesn't seem that bad. Are we sure he's ADD? I've been told that kids his age are supposed to be active. Are we sure he's ADD? On the other hand, the school has brought up time and time again that his lack of focus is impeding his learning potential. He's average intelligence and should be performing at that level but his lack of focus interferes. I know. The fact that we don't know what is going on neurologically with him keeps me from wanting to confuse the issue more by adding chemicals to his system. If and when we absolutely have no other options, we may consider medication. Until that time, I'm sorry. The school and we, his family, will just have to work our tails off to help him succeed.
I strongly dislike an ADD diagnosis because of the judgment that comes along with it. The diagnosis though has opened doors for more interventions and services at school that he didn't qualify for before the diagnosis. The adjustment to the new school year has been very rocky so far. It has not been going well. We will continue to work with our little man to help him learn self control, self monitoring, and self sufficiency. Until that is achieved, we will support him and reassure him that we love him whether he is doing well or struggling. Our job is to help him grow into the man that he is supposed to become. It is exhausting. I pray every single day for the strength and fortitude to get it done. Please Lord help us be the very best parents that we can be. We definitely aren't the parents we envisioned ourselves to be but hopefully we are the parents he needs us to be. Guide us through this journey. It has been a long one and we have a long way to go yet.
Friday, September 6, 2013
Thursday, July 4, 2013
Celebrating Independence
It's 5 am on Independence Day, July 4, and an aging bone structure and a whirling mind have me wide awake. I recently wrote about my youngest son's struggle for independence from an unfair and oppressive regime (we, his parents). In honor of our country's independence, I am choosing to celebrate the victorious battles for independence in this long and often painful war.
Last weekend, my family went to our cabin on the west rim of the Pennsylvania grand canyon. Our cabin is on the second highest point on the west rim of this beautiful mountain chain. It has no running water or electricity. We use a hand pump from a well for water. Sometimes it gets too dry in the summer months, then we have to locate known natural springs and fill buckets with water. An outhouse and outdoor hanging bucket/shower nozzle are our hygiene facilities. Propane tanks fuel a refrigerator and stove. It is silent and simple and serene. My children become totally different people up in these mountains. They play together peacefully, using their imaginations. It is here, in this setting, that my son struck a blow for independence. It was a powerful moment for us all.
As I have discussed in the past, my youngest has fine motor and gross motor coordination issues. One area that has been a consistent struggle is one that comes very simply for many children. He could not coordinate his feet in the up/down/circle/rotation manner required to peddle a bicycle. As a toddler, we bought him a three wheeler, one that was low to the ground, sturdy, and used by most boys to tear around and get into serious trouble. He could never figure out the movement needed to make it go. We would crawl along beside him, moving his feet in the pattern needed to make it move, but as soon as we would let go, his feet would fly off the peddles and he would loose the rhythm. He learned early on to coax his older brother into pushing him along on it. The two of them would zip along laughing and squealing. Tons of fun for them both but not very productive for learning to master the bike.
As stated previously, our son has been consistently above average in height for his age. Because of this, it hasn't been possible for him to continue working on a bicycle that is stage appropriate for him. He has been forced by necessity to move on to bigger bikes before he was capable of riding them. His current bike is a standard child's bike with training wheels. My husband has the training wheels set in such a way that there is very little "wiggle room". They keep him upright. He just has to focus on the machinations of peddling. Up until last week, this skill was beyond his abilities. But up in these beautiful mountains, our boy finally put all the pieces together and learned to peddle. You may be thinking, "Big deal lady. He's seven. He's kinda old to be celebrating learning to peddle a bike with training wheels." AH! But this is a step toward independence! You don't know how many times we have walked along beside him, trying to steer the bike with one hand, while attempting to help him move his feet in the right pattern, while trying to walk/jog beside him. You didn't see the absolute joy on his face. You didn't hear him chanting to himself as he peddled along, "I can do it! I can do it!" You didn't see the pride beaming from that beautiful face after his brother ran back to the cabin to get his Dad to come see him riding independently down that solitary road in the mountains. If you did, you would have celebrated too. Pride. Independence. Success.
There have been many other little steps towards independence over the last few weeks. He drew an octopus family; cut them out; and used only a tiny dab of glue to turn them into Popsicle stick puppets. In the past, there would have been a mountain of paste on the table, marker/crayon written all over the table, and paper scraps everywhere from the failed attempts to cut them out. But this time, there was success. A battle won for independence. He has been writing cards and letters, and signs CONSTANTLY this summer. Last week he declared it was "brudder's day" and made his older brother a card to celebrate. Two days ago, he made a sign asking the vampires to not hurt his brother's girlfriend. (??) Yesterday, he made me a card thanking me for making beef and noodles and using my "brane" to help him. Writing used to be a huge area of concern for us. It was such a struggle. Now he wants to do it all the time. It's still difficult to read at times, and not totally age appropriate yet, but it's a battle won in the war for independence.
Last night, his older brother had an open track event at a local school. We all went to support him and cheer him on. Our youngest son stood by the gate to the track while we sat in the stands. He cheered for his brother and hugged him in celebration after every event. As the evening began to wind down, our youngest ran to us and declared that he wanted to run too. It gave me pause. Should we let him? Could he do it? What if he lagged far behind and was embarrassed? What if he fell and hurt himself? Because it is an open event for all ages, we told him yes. Next time we came, we would sign him up for the 50 meter and the 100 meter. He is sooo excited. But he really wants to run the hurdles. *sigh* We told him let's take it one step at a time. Knowing our boy and his battles for independence, knowing our desire to help him grow and develop as he should, I'll probably be telling you about how he defied all expectations and ran over the hurdles.
Thank you Lord for the battles. They can be ugly and exhausting. They can also bring about change and growth. We are grateful for that. He continues to push the boundaries. He continues to surprise us. Thank you for watching over him, providing safety, and guiding us as we attempt to help him become the man that you would want him to be.
Last weekend, my family went to our cabin on the west rim of the Pennsylvania grand canyon. Our cabin is on the second highest point on the west rim of this beautiful mountain chain. It has no running water or electricity. We use a hand pump from a well for water. Sometimes it gets too dry in the summer months, then we have to locate known natural springs and fill buckets with water. An outhouse and outdoor hanging bucket/shower nozzle are our hygiene facilities. Propane tanks fuel a refrigerator and stove. It is silent and simple and serene. My children become totally different people up in these mountains. They play together peacefully, using their imaginations. It is here, in this setting, that my son struck a blow for independence. It was a powerful moment for us all.
As I have discussed in the past, my youngest has fine motor and gross motor coordination issues. One area that has been a consistent struggle is one that comes very simply for many children. He could not coordinate his feet in the up/down/circle/rotation manner required to peddle a bicycle. As a toddler, we bought him a three wheeler, one that was low to the ground, sturdy, and used by most boys to tear around and get into serious trouble. He could never figure out the movement needed to make it go. We would crawl along beside him, moving his feet in the pattern needed to make it move, but as soon as we would let go, his feet would fly off the peddles and he would loose the rhythm. He learned early on to coax his older brother into pushing him along on it. The two of them would zip along laughing and squealing. Tons of fun for them both but not very productive for learning to master the bike.
As stated previously, our son has been consistently above average in height for his age. Because of this, it hasn't been possible for him to continue working on a bicycle that is stage appropriate for him. He has been forced by necessity to move on to bigger bikes before he was capable of riding them. His current bike is a standard child's bike with training wheels. My husband has the training wheels set in such a way that there is very little "wiggle room". They keep him upright. He just has to focus on the machinations of peddling. Up until last week, this skill was beyond his abilities. But up in these beautiful mountains, our boy finally put all the pieces together and learned to peddle. You may be thinking, "Big deal lady. He's seven. He's kinda old to be celebrating learning to peddle a bike with training wheels." AH! But this is a step toward independence! You don't know how many times we have walked along beside him, trying to steer the bike with one hand, while attempting to help him move his feet in the right pattern, while trying to walk/jog beside him. You didn't see the absolute joy on his face. You didn't hear him chanting to himself as he peddled along, "I can do it! I can do it!" You didn't see the pride beaming from that beautiful face after his brother ran back to the cabin to get his Dad to come see him riding independently down that solitary road in the mountains. If you did, you would have celebrated too. Pride. Independence. Success.
There have been many other little steps towards independence over the last few weeks. He drew an octopus family; cut them out; and used only a tiny dab of glue to turn them into Popsicle stick puppets. In the past, there would have been a mountain of paste on the table, marker/crayon written all over the table, and paper scraps everywhere from the failed attempts to cut them out. But this time, there was success. A battle won for independence. He has been writing cards and letters, and signs CONSTANTLY this summer. Last week he declared it was "brudder's day" and made his older brother a card to celebrate. Two days ago, he made a sign asking the vampires to not hurt his brother's girlfriend. (??) Yesterday, he made me a card thanking me for making beef and noodles and using my "brane" to help him. Writing used to be a huge area of concern for us. It was such a struggle. Now he wants to do it all the time. It's still difficult to read at times, and not totally age appropriate yet, but it's a battle won in the war for independence.
Last night, his older brother had an open track event at a local school. We all went to support him and cheer him on. Our youngest son stood by the gate to the track while we sat in the stands. He cheered for his brother and hugged him in celebration after every event. As the evening began to wind down, our youngest ran to us and declared that he wanted to run too. It gave me pause. Should we let him? Could he do it? What if he lagged far behind and was embarrassed? What if he fell and hurt himself? Because it is an open event for all ages, we told him yes. Next time we came, we would sign him up for the 50 meter and the 100 meter. He is sooo excited. But he really wants to run the hurdles. *sigh* We told him let's take it one step at a time. Knowing our boy and his battles for independence, knowing our desire to help him grow and develop as he should, I'll probably be telling you about how he defied all expectations and ran over the hurdles.
Thank you Lord for the battles. They can be ugly and exhausting. They can also bring about change and growth. We are grateful for that. He continues to push the boundaries. He continues to surprise us. Thank you for watching over him, providing safety, and guiding us as we attempt to help him become the man that you would want him to be.
Sunday, June 23, 2013
Developmental Stages
"It's not fair!"
"You never listen to me!"
"You never believe me!"
"I can do it!"
These have become commonly heard refrains in our home over the last month or so. My youngest son is smack dab in the middle of the stage of development in which he is seeking to assert his independence from us. During this stage, children often see themselves as capable of doing more than the parents feel they are capable of doing. While the goal of the parent is the safety of the child, the goal of the child is self-sufficiency. The result of these discrepancies can be a power struggle. Add in developmental issues that affect the motor skills of that child and you have the recipe for conflict.
Our son has been found to have normal cognitive abilities. He's just as smart as his same age peers. Unfortunately, his delays appear to be mostly expressive in nature, in essence, keeping an average kid trapped inside a body that won't let him show that he's just like everyone else. Lately, this has begun to be a source of serious frustration for him. Not only does he want to do what other kids his age are doing, he wants to be able to do anything that his twelve year-old brother is doing. Logically, this isn't possible. Try rationalizing that to a frustrated seven year-old.
There have been many situations over the last month or so that have come about because of this desire to be more independent. His intention or motivation in each instance was a sincere wish to be helpful or independent. For example, the other day I came in from weeding the garden to find a HUGE mess. Because I know he is into everything right now, I purposely set a timer and only stayed out for short periods of time so that I could come in and check on him. Apparently, that didn't work. Our son wanted to help me by "making drinks for everyone." Very sweet intentions. Unfortunately, the timing was very poor. I had come in to get his brother a sandwich because he was experiencing a low blood sugar episode. (He's hypoglycemic.) He needed protein and in a short amount of time. What I walked into was not going to help me achieve that goal in a timely manner. My youngest had attempted to make me a cup of coffee. He had water spread over two different rooms, on the floor, on counters, everywhere. For some reason, he had mixed dry creamer and Splenda in a bowl which I didn't realize until later in the day when I went to make a glass of ice tea. Used tea bags sat in the sink. There were also coffee grounds in every conceivable place you could think of. The coffee pot was full of grounds both inside and out. The coffee urn was filled half full of a questionable substance. I'm still not sure what it was. My dish towel was in the garbage. The vacuum was sitting in the middle of the floor. Bless his heart he just wanted to get me a drink because I was out in the sun and must be thirsty.
I am proud to report that I stayed calm and handled it really well. After I got his brother a quick sandwich, we discussed that he needed to ask for help when getting something to drink. This didn't go over well. He went into "Rainman" mode because he wanted to do it himself and here I was asking him to ask for help. Secondly, he knew he wasn't successful and couldn't do it himself but admitting that to himself would mean he wasn't a big kid. The situation was just too frustrating for him to process so he melted down. He kept repeating the same phrases over and over. This is his way of dealing with frustration when a situation doesn't fit with his view of how it should be going. He will repetitively say the same phrase or group of phrases again and again. I eventually got him to calm down enough that he would stay in his room and play until I got the kitchen and dining room cleaned and mopped. When he came downstairs later, he went right back into the repetitive phrases because in his mind the issue had not been resolved.
At his yearly neurological appointment this week, we discussed these type of behaviors with his doctor. His response was encouraging yet frustrating. The behaviors we are seeing only occur at home. Both school and the neurologist say this is a good sign. Excuse me! Good? Because he is able to isolate the behavior to home, shows he has an understanding of what behaviors are appropriate and not appropriate for being out in public. They said it is very normal for a child to hold in his frustration all day through school and public situations, then vent that frustration when he is home in a safe environment surrounded by people he trusts to still love him when the moment is over. In other words, we are his soft place to fall.
Both school and the doctors see his behavior as typical for the stage he is in. We find them particularly frustrating because we are receiving the brunt of them. They are also frustrating because they are stage appropriate but not age appropriate. Because he is in the ninety-seventh percentile for size, he appears older than he is. Combine that large size with his typical year or more delay and to us, you have a child who appears to be quite age inappropriate in behavior. Fortunately, his good manners and great social skills compensate for this in a public setting therefore most people who meet him casually rarely pick up on his differences, aside from his speech issues.
Intellectually, I get that it is great that he is in this stage of development. Children need to learn to assert their independence. Our goal is to raise self-sufficient individuals who can contribute productively to society. Emotionally, it is exhausting that he is in this stage of development. It sometimes feels like we are getting it all wrong. Then we see him at a school function or playing with friends and we know we are getting the important things right. We just need to be patient and give him time, his time, to put all the pieces together.
Thank you Lord for growth and movement in a forward direction. I pray for the patience and stamina to see him to where he needs to go. The journey certainly won't be boring.
"You never listen to me!"
"You never believe me!"
"I can do it!"
These have become commonly heard refrains in our home over the last month or so. My youngest son is smack dab in the middle of the stage of development in which he is seeking to assert his independence from us. During this stage, children often see themselves as capable of doing more than the parents feel they are capable of doing. While the goal of the parent is the safety of the child, the goal of the child is self-sufficiency. The result of these discrepancies can be a power struggle. Add in developmental issues that affect the motor skills of that child and you have the recipe for conflict.
Our son has been found to have normal cognitive abilities. He's just as smart as his same age peers. Unfortunately, his delays appear to be mostly expressive in nature, in essence, keeping an average kid trapped inside a body that won't let him show that he's just like everyone else. Lately, this has begun to be a source of serious frustration for him. Not only does he want to do what other kids his age are doing, he wants to be able to do anything that his twelve year-old brother is doing. Logically, this isn't possible. Try rationalizing that to a frustrated seven year-old.
There have been many situations over the last month or so that have come about because of this desire to be more independent. His intention or motivation in each instance was a sincere wish to be helpful or independent. For example, the other day I came in from weeding the garden to find a HUGE mess. Because I know he is into everything right now, I purposely set a timer and only stayed out for short periods of time so that I could come in and check on him. Apparently, that didn't work. Our son wanted to help me by "making drinks for everyone." Very sweet intentions. Unfortunately, the timing was very poor. I had come in to get his brother a sandwich because he was experiencing a low blood sugar episode. (He's hypoglycemic.) He needed protein and in a short amount of time. What I walked into was not going to help me achieve that goal in a timely manner. My youngest had attempted to make me a cup of coffee. He had water spread over two different rooms, on the floor, on counters, everywhere. For some reason, he had mixed dry creamer and Splenda in a bowl which I didn't realize until later in the day when I went to make a glass of ice tea. Used tea bags sat in the sink. There were also coffee grounds in every conceivable place you could think of. The coffee pot was full of grounds both inside and out. The coffee urn was filled half full of a questionable substance. I'm still not sure what it was. My dish towel was in the garbage. The vacuum was sitting in the middle of the floor. Bless his heart he just wanted to get me a drink because I was out in the sun and must be thirsty.
I am proud to report that I stayed calm and handled it really well. After I got his brother a quick sandwich, we discussed that he needed to ask for help when getting something to drink. This didn't go over well. He went into "Rainman" mode because he wanted to do it himself and here I was asking him to ask for help. Secondly, he knew he wasn't successful and couldn't do it himself but admitting that to himself would mean he wasn't a big kid. The situation was just too frustrating for him to process so he melted down. He kept repeating the same phrases over and over. This is his way of dealing with frustration when a situation doesn't fit with his view of how it should be going. He will repetitively say the same phrase or group of phrases again and again. I eventually got him to calm down enough that he would stay in his room and play until I got the kitchen and dining room cleaned and mopped. When he came downstairs later, he went right back into the repetitive phrases because in his mind the issue had not been resolved.
At his yearly neurological appointment this week, we discussed these type of behaviors with his doctor. His response was encouraging yet frustrating. The behaviors we are seeing only occur at home. Both school and the neurologist say this is a good sign. Excuse me! Good? Because he is able to isolate the behavior to home, shows he has an understanding of what behaviors are appropriate and not appropriate for being out in public. They said it is very normal for a child to hold in his frustration all day through school and public situations, then vent that frustration when he is home in a safe environment surrounded by people he trusts to still love him when the moment is over. In other words, we are his soft place to fall.
Both school and the doctors see his behavior as typical for the stage he is in. We find them particularly frustrating because we are receiving the brunt of them. They are also frustrating because they are stage appropriate but not age appropriate. Because he is in the ninety-seventh percentile for size, he appears older than he is. Combine that large size with his typical year or more delay and to us, you have a child who appears to be quite age inappropriate in behavior. Fortunately, his good manners and great social skills compensate for this in a public setting therefore most people who meet him casually rarely pick up on his differences, aside from his speech issues.
Intellectually, I get that it is great that he is in this stage of development. Children need to learn to assert their independence. Our goal is to raise self-sufficient individuals who can contribute productively to society. Emotionally, it is exhausting that he is in this stage of development. It sometimes feels like we are getting it all wrong. Then we see him at a school function or playing with friends and we know we are getting the important things right. We just need to be patient and give him time, his time, to put all the pieces together.
Thank you Lord for growth and movement in a forward direction. I pray for the patience and stamina to see him to where he needs to go. The journey certainly won't be boring.
Monday, May 13, 2013
Pity Parties and Other Parental Maladies
Another Mother's Day has come and gone. It wasn't what I had been hoping it would be. No card. No flowers. (Other than the ones my husband told me to pick out for myself when buying flowers for our mothers) No acknowledgement of all the time and effort I put into making their lives more comfortable. Matter of fact, both boys woke up extra early and as a result, were out of sorts throughout the day. Was this the Mother's Day I deserved? I was disheartened to think how little they appreciated me.
They spent Saturday hunting while I stayed home and cleaned the house. I prepared the food for the Mother's Day luncheon we were having for our parents the next day. On Mother's Day itself, after lunch was cooked and served, they didn't even offer to help clean up. After everyone left, we went to a sporting goods store and bought cross country running shoes for my oldest son and new socks for my husband. Some great Mother's Day this turned out to be.
This was the conversation that went on in my head throughout Mother's Day. It was a sad, pathetic, pity party for one. The internal dialogue was poisonous and unproductive. I stewed as I browsed all the fantastic postings of mothers who got presents and whose husbands had done nice things for them. Then I saw it. A post written by a dear woman that I consider to be one of God's angels on Earth. She lives her life in service to the Lord each and every day. She lives His word. Her post was an open letter to her son. Mother's Day was his birthday. In her letter, she expressed her love and devotion to him. That beautiful woman of God lost her son this year. This was her first Mother's Day without him and it fell on his birthday.
All I could think was "Dear Lord forgive me". I felt small. I felt pitiful. I felt ashamed. Here I sat, feeling mistreated and alone because they had failed to honor how much I did for them. In contrast, I know that this unselfish woman would be grateful for just one more moment with her son by her side. Then this morning I turn on the local news and learn that a woman lost her husband, her sister, and her four children in a house fire while she was away from home. On Mother's Day, she lost her entire family. I can't even begin to imagine that level of grief. Life without my men? It would be more than I could bear.
Do I wish my Mother's Day had been different? Resoundingly, I say YES! I wish I had soaked up every second of that time with my family. The moment in church when my oldest son reached over during the one hymn to hold my hand. The moment when my youngest son crawled on my lap and leaned back against me to snuggle. The moment when my husband reached his arm around my waist to pull me against him for just a second to say that unspoken "I love you." The moment when the boys giggled and squealed as they wrestled around on the couch. I wish I had EMBRACED the moments. Smiled. Sighed in satisfaction that this life was mine. That these men were mine. How blessed I am. How very, very blessed.
The Lord brings people and circumstances into our lives to teach us lessons. I pray that I continue to be open to those lessons. Please Lord let me recognize the beauty and the blessings that surround me everyday. Let me extinguish the internal dialogue that acts as a destructive force in my heart. Let me laugh more and criticize less, hug more and worry less.
They spent Saturday hunting while I stayed home and cleaned the house. I prepared the food for the Mother's Day luncheon we were having for our parents the next day. On Mother's Day itself, after lunch was cooked and served, they didn't even offer to help clean up. After everyone left, we went to a sporting goods store and bought cross country running shoes for my oldest son and new socks for my husband. Some great Mother's Day this turned out to be.
This was the conversation that went on in my head throughout Mother's Day. It was a sad, pathetic, pity party for one. The internal dialogue was poisonous and unproductive. I stewed as I browsed all the fantastic postings of mothers who got presents and whose husbands had done nice things for them. Then I saw it. A post written by a dear woman that I consider to be one of God's angels on Earth. She lives her life in service to the Lord each and every day. She lives His word. Her post was an open letter to her son. Mother's Day was his birthday. In her letter, she expressed her love and devotion to him. That beautiful woman of God lost her son this year. This was her first Mother's Day without him and it fell on his birthday.
All I could think was "Dear Lord forgive me". I felt small. I felt pitiful. I felt ashamed. Here I sat, feeling mistreated and alone because they had failed to honor how much I did for them. In contrast, I know that this unselfish woman would be grateful for just one more moment with her son by her side. Then this morning I turn on the local news and learn that a woman lost her husband, her sister, and her four children in a house fire while she was away from home. On Mother's Day, she lost her entire family. I can't even begin to imagine that level of grief. Life without my men? It would be more than I could bear.
Do I wish my Mother's Day had been different? Resoundingly, I say YES! I wish I had soaked up every second of that time with my family. The moment in church when my oldest son reached over during the one hymn to hold my hand. The moment when my youngest son crawled on my lap and leaned back against me to snuggle. The moment when my husband reached his arm around my waist to pull me against him for just a second to say that unspoken "I love you." The moment when the boys giggled and squealed as they wrestled around on the couch. I wish I had EMBRACED the moments. Smiled. Sighed in satisfaction that this life was mine. That these men were mine. How blessed I am. How very, very blessed.
The Lord brings people and circumstances into our lives to teach us lessons. I pray that I continue to be open to those lessons. Please Lord let me recognize the beauty and the blessings that surround me everyday. Let me extinguish the internal dialogue that acts as a destructive force in my heart. Let me laugh more and criticize less, hug more and worry less.
Saturday, April 20, 2013
Coordinating Specialists
"A doctor who cannot take a good history and a patient who cannot give one are in
danger of giving and receiving bad treatment." (Author Unknown) Experience has taught me a lot that I didn't know about being the mother of a patient. The most important lesson that I have learned is that you have a short window of time to describe a medical concern before the doctor tunes you out and decides for himself exactly what is going on. When you are being shuffled between various specialists' offices, it is even more important to have your facts and your thoughts clear. (I keep a notebook.)
As I have discussed recently, my youngest son has been in the midst of an ear infection/asthma flair for a couple weeks/months now. His primary doctor evaluated the situation and prescribed treatment three times. After the third visit, he referred us to our pulmonary specialist. Our pulmonary specialist in turn altered and extended the treatment started by our son's primary doctor. He then referred us to an ear, nose, and throat (ENT) specialist and a pediatric gastroenterologist to try to determine the source of our son's ongoing asthma flair.
The ENT specialist briefly reviewed our son's medical history; gave him a short exam; then determined that his ear appears to be healing. As she put it, "That is a chronically ill ear. It looks retracted and sick but actually seems to be healing." She stated that she can't believe he doesn't have some hearing loss by looking at the ear in question. I explained that he had just had a full audiology exam and has perfect hearing and is actually hypersensitive to sound. She just shook her head. You've got to laugh. Once again, the little guy is defying the odds.
One of the frustrations of going between different specialists for related issues is the lack of coordination between these different departments. When dealing with specialty departments, you take the first available appointment or you may wait for months to get seen. Because they are fitting you in as soon as possible, it's almost impossible to coordinate different appointments for the same day. As a result, you end up taking a lot of time off from work and school to try and make these appointments.
Thanks to modern technology, doctors and specialists within the same medical system are able to share their notes with one another through the computer. This sharing of information and opinions should help save time if the doctors have done their homework and read the notes before coming in for the appointment, and if the doctors have clearly and completely documented their information, treatment, and recommendations. Those are some pretty big ifs. It becomes your job, as the parent, to make sure all information has been provided, and provided clearly. It is your job to clarify, explain, or expand upon the information needed to make the correct decisions.
Another problem with going between different specialists for related issues is that each doctor will be approaching the problem from her specialty's perspective. For example, our son's primary prescribed newer antibiotics for ten day treatments because he knew how much medicine our son has been on and he fears over using antibiotics. Conversely, our son's pulmonary doctor prescribed a month of Bactrim because he fears the length of treatment wasn't sufficient to completely clear the ear infection/sinus infection that may have been causing our son's asthma flair. He primary concern, as a pulmonary doctor, was to get the airways less inflamed; knock out any existing infection; and regrow the injured cilia of the sinuses. On the other end of the spectrum, the ENT doctor said she would have recommended no antibiotics; use of a humidifier (which we already use and our pulmonary doctor said was not really necessary); and a nasal gel to address his nose bleeds. She stated that some ear infections may take months to clear and that time and patience are the best treatment. She did acknowledged though that a chronic asthmatic, once flared, can't wait months for an ear infection to clear. They have to be able to breathe. As a result, she concurred with the pulmonary doctor in both his treatment and the referral to gastroenterology. If the ears continue to act up over the next month or so, she will see him back and probably put in his fourth set of tubes. *Fingers crossed that this is not necessary.
We have run into this conflict between specialties, time and again with our son with his developmental and medical issues. The doctors say he needs a particular service. The school says he needs something different. His neurologist says his issues are neurologically based and nothing can be done but provide treatment for what develops with time. The school says please get him assessed for an auditory processing disorder and a functional vision disorder. His neurologist disagrees and says that is not needed. Once again, everyone is looking at it from their own specialty.
I'm looking at our son as his mother. I love him. I want the best for him, be it medically or educationally. As his mother, I am his advocate, his voice. When things are confusing or unclear, I try to make it make sense. When communication is lacking, I provide the missing pieces. I read and I research and I ask questions. I make phone calls and I fight with insurance companies and I badger secretaries for information. Through it all, I try to be polite, patient and compassionate to the individual who is just trying to do his job. At the same time, I am his mother. I will make sure that what needs done, gets done and gets done well.
I thank God for the ability to be an advocate for my child. I thank Him for the strength and fortitude to do what needs to be done. I also pray for all the little ones who don't have advocates, who don't have a voice speaking for them. Protect them Lord. Cover them with your grace and protection. Continue to watch over us and grant us wisdom, strength and guidance.
As I have discussed recently, my youngest son has been in the midst of an ear infection/asthma flair for a couple weeks/months now. His primary doctor evaluated the situation and prescribed treatment three times. After the third visit, he referred us to our pulmonary specialist. Our pulmonary specialist in turn altered and extended the treatment started by our son's primary doctor. He then referred us to an ear, nose, and throat (ENT) specialist and a pediatric gastroenterologist to try to determine the source of our son's ongoing asthma flair.
The ENT specialist briefly reviewed our son's medical history; gave him a short exam; then determined that his ear appears to be healing. As she put it, "That is a chronically ill ear. It looks retracted and sick but actually seems to be healing." She stated that she can't believe he doesn't have some hearing loss by looking at the ear in question. I explained that he had just had a full audiology exam and has perfect hearing and is actually hypersensitive to sound. She just shook her head. You've got to laugh. Once again, the little guy is defying the odds.
One of the frustrations of going between different specialists for related issues is the lack of coordination between these different departments. When dealing with specialty departments, you take the first available appointment or you may wait for months to get seen. Because they are fitting you in as soon as possible, it's almost impossible to coordinate different appointments for the same day. As a result, you end up taking a lot of time off from work and school to try and make these appointments.
Thanks to modern technology, doctors and specialists within the same medical system are able to share their notes with one another through the computer. This sharing of information and opinions should help save time if the doctors have done their homework and read the notes before coming in for the appointment, and if the doctors have clearly and completely documented their information, treatment, and recommendations. Those are some pretty big ifs. It becomes your job, as the parent, to make sure all information has been provided, and provided clearly. It is your job to clarify, explain, or expand upon the information needed to make the correct decisions.
Another problem with going between different specialists for related issues is that each doctor will be approaching the problem from her specialty's perspective. For example, our son's primary prescribed newer antibiotics for ten day treatments because he knew how much medicine our son has been on and he fears over using antibiotics. Conversely, our son's pulmonary doctor prescribed a month of Bactrim because he fears the length of treatment wasn't sufficient to completely clear the ear infection/sinus infection that may have been causing our son's asthma flair. He primary concern, as a pulmonary doctor, was to get the airways less inflamed; knock out any existing infection; and regrow the injured cilia of the sinuses. On the other end of the spectrum, the ENT doctor said she would have recommended no antibiotics; use of a humidifier (which we already use and our pulmonary doctor said was not really necessary); and a nasal gel to address his nose bleeds. She stated that some ear infections may take months to clear and that time and patience are the best treatment. She did acknowledged though that a chronic asthmatic, once flared, can't wait months for an ear infection to clear. They have to be able to breathe. As a result, she concurred with the pulmonary doctor in both his treatment and the referral to gastroenterology. If the ears continue to act up over the next month or so, she will see him back and probably put in his fourth set of tubes. *Fingers crossed that this is not necessary.
We have run into this conflict between specialties, time and again with our son with his developmental and medical issues. The doctors say he needs a particular service. The school says he needs something different. His neurologist says his issues are neurologically based and nothing can be done but provide treatment for what develops with time. The school says please get him assessed for an auditory processing disorder and a functional vision disorder. His neurologist disagrees and says that is not needed. Once again, everyone is looking at it from their own specialty.
I'm looking at our son as his mother. I love him. I want the best for him, be it medically or educationally. As his mother, I am his advocate, his voice. When things are confusing or unclear, I try to make it make sense. When communication is lacking, I provide the missing pieces. I read and I research and I ask questions. I make phone calls and I fight with insurance companies and I badger secretaries for information. Through it all, I try to be polite, patient and compassionate to the individual who is just trying to do his job. At the same time, I am his mother. I will make sure that what needs done, gets done and gets done well.
I thank God for the ability to be an advocate for my child. I thank Him for the strength and fortitude to do what needs to be done. I also pray for all the little ones who don't have advocates, who don't have a voice speaking for them. Protect them Lord. Cover them with your grace and protection. Continue to watch over us and grant us wisdom, strength and guidance.
Tuesday, April 9, 2013
Traveling With An Asthmatic
I wake from a sound sleep wondering what has startled me awake. Then I hear it, that choking gasping sound coming through the monitor. My youngest son may be seven but we still keep a baby monitor in his room for moments just like these. Unfortunately, these moments have been almost a nightly occurrence for the last month and a half. He has been in an asthma flair for nearly six weeks with no end in sight.
Our son's primary doctor identified that his right ear is infected. Has been infected. Over the last six weeks, he has been on Prednisone, an oral steroid, and he has been prescribed three different antibiotics. These medicines are in addition to his regular preventative medicines (Singulair, Flovent, Omneprazole, and Loratadine) that he takes on a daily basis. During flairs like this, we also use his Albuterol nebulizer every four hours, round the clock. In addition, saline spray is used to moisten his nasal cavities and wash out any bacteria that may be trying to grow there; the head end of his bed is elevated on blocks; and a humidifier adds moisture to the air and his sinuses. This is all part of our regular routine. We are used to this. It's what we do to survive life with our son.
Unfortunately, this time, none of it seems to be working. His primary doctor was at a loss for what to do so he put in an emergency consult with our son's pulmonary specialist. After going to see the pulmonary specialist, he was at a loss of what to do, so he put in a referral to the ear, nose, and throat specialist and the gastrointestinal specialist. In the meantime, his pulmonary doctor prescribed a month of Bactrim at the highest dosage and an increase in his Omneprazole. He fears that our son may need another set of ear tubes (he has had three prior sets). He also fears that he may need his tonsils removed (his adenoids were removed when the last set of ear tubes were put in). His biggest fear though is that the root of all of these issues may be reflux that is not being controlled by his current medications. Reflux is the primary cause of asthma in children. If reflux is the main problem, all we have been doing is the equivalent of putting a bandaid on an open wound. Until the other specialists can determine a definitive causation, he wants him on the Bactrim long term to control current infection; to prevent further infection; and to help the cilia in his sinuses begin to regrow. Life with this boy often seems like the children's book If You Give A Mouse A Cookie but instead it's If You Give A Doctor A Symptom.
During the midst of this current flair, my sister was getting married two hours from our home. I was dreading this event, not because of the wedding itself, but because we were taking our son along in his current state. Those of you that have had to travel with a serious asthmatic know that it is a practice in strategizing and planning. It's a challenge to remember to pack all the medicines and all the "gear". For example, we have a converter for our truck so that we can have electricity to power our son's nebulizer anywhere we go. This comes in really handy when traveling long distances or traveling where you aren't sure of an electrical supply. We also keep an emergency box stocked with all the supplies needed to treat the symptoms associated with such a flair. After making lists, packing, planning, and trying to think of worse case scenarios, I felt fairly confident that we could weather this without too many issues.
Fortunately, it went just about as planned. I forgot to factor in the fact that he was on Prednisone and would be contained to hotel rooms, churches and reception halls. That combined with his excitement for the event equaled manicness!!! He was like a ping pong ball set loose.
Thankfully we had rented a suite at the hotel because at 1:30 am, he woke with one of his gagging/choking/wheezing spells. Not wanting to wake his older brother who was sleeping on the pull out couch in the other room, I stumbled through the kitchen using my cell phone as my flashlight, trying to locate his emergency kit. After finding it, I took it into our room where I climbed into bed with him to get him sitting upright and administered his breathing treatment. My husband sat on the edge of the bed holding the nebulizer machine so the vibrations of this noisy piece of equipment wouldn't wake our older son or other patrons in other rooms. When the treatment was over and I had him settled back into bed, I verbally started going through my checklist of medications that he had been given and when he could take them again. At that moment, our little monster piped up with "Excuse me you two, could you hold it down please. I'm trying to sleep over here." I didn't know whether to laugh, cry, or choke him.
The next day, after arriving at the reception hall, my husband gave our son a breathing treatment on the tailgate of our truck. Thank goodness he gave him one before going in because he was a moving, grooving, boogie down dancer. He danced by himself, with brides maids, with other kids, with adults, with men, with women, basically, with anyone who would join him. He had a blast. As a result, he got coughing jags. None too serious though. My brother expressed concern that he was so busy and kept coughing. I told him if he could calm him down to feel free, it would be helpful. So for awhile, he played on his Kindle Fire with his uncle. Before heading for home, we gave him another breathing treatment on the tailgate of the truck. We survived! It was a beautiful wedding. My sister was GORGEOUS! We all had fun.
Living with a child like ours often feels like a balancing act. You want to keep them safe and healthy. At the same time, too much "safety" and "prevention" can stifle the potential that child might otherwise achieve. I want the best for him. I want him healthy and strong but I also want him to be free to experience life and live fully with the joy that comes so naturally to him. Lord, help me find that balance. Help me know when to hold him back and when to set him free. He'll find the joy wherever he goes. I just need to allow him the opportunities to find it.
Our son's primary doctor identified that his right ear is infected. Has been infected. Over the last six weeks, he has been on Prednisone, an oral steroid, and he has been prescribed three different antibiotics. These medicines are in addition to his regular preventative medicines (Singulair, Flovent, Omneprazole, and Loratadine) that he takes on a daily basis. During flairs like this, we also use his Albuterol nebulizer every four hours, round the clock. In addition, saline spray is used to moisten his nasal cavities and wash out any bacteria that may be trying to grow there; the head end of his bed is elevated on blocks; and a humidifier adds moisture to the air and his sinuses. This is all part of our regular routine. We are used to this. It's what we do to survive life with our son.
Unfortunately, this time, none of it seems to be working. His primary doctor was at a loss for what to do so he put in an emergency consult with our son's pulmonary specialist. After going to see the pulmonary specialist, he was at a loss of what to do, so he put in a referral to the ear, nose, and throat specialist and the gastrointestinal specialist. In the meantime, his pulmonary doctor prescribed a month of Bactrim at the highest dosage and an increase in his Omneprazole. He fears that our son may need another set of ear tubes (he has had three prior sets). He also fears that he may need his tonsils removed (his adenoids were removed when the last set of ear tubes were put in). His biggest fear though is that the root of all of these issues may be reflux that is not being controlled by his current medications. Reflux is the primary cause of asthma in children. If reflux is the main problem, all we have been doing is the equivalent of putting a bandaid on an open wound. Until the other specialists can determine a definitive causation, he wants him on the Bactrim long term to control current infection; to prevent further infection; and to help the cilia in his sinuses begin to regrow. Life with this boy often seems like the children's book If You Give A Mouse A Cookie but instead it's If You Give A Doctor A Symptom.
During the midst of this current flair, my sister was getting married two hours from our home. I was dreading this event, not because of the wedding itself, but because we were taking our son along in his current state. Those of you that have had to travel with a serious asthmatic know that it is a practice in strategizing and planning. It's a challenge to remember to pack all the medicines and all the "gear". For example, we have a converter for our truck so that we can have electricity to power our son's nebulizer anywhere we go. This comes in really handy when traveling long distances or traveling where you aren't sure of an electrical supply. We also keep an emergency box stocked with all the supplies needed to treat the symptoms associated with such a flair. After making lists, packing, planning, and trying to think of worse case scenarios, I felt fairly confident that we could weather this without too many issues.
Fortunately, it went just about as planned. I forgot to factor in the fact that he was on Prednisone and would be contained to hotel rooms, churches and reception halls. That combined with his excitement for the event equaled manicness!!! He was like a ping pong ball set loose.
Thankfully we had rented a suite at the hotel because at 1:30 am, he woke with one of his gagging/choking/wheezing spells. Not wanting to wake his older brother who was sleeping on the pull out couch in the other room, I stumbled through the kitchen using my cell phone as my flashlight, trying to locate his emergency kit. After finding it, I took it into our room where I climbed into bed with him to get him sitting upright and administered his breathing treatment. My husband sat on the edge of the bed holding the nebulizer machine so the vibrations of this noisy piece of equipment wouldn't wake our older son or other patrons in other rooms. When the treatment was over and I had him settled back into bed, I verbally started going through my checklist of medications that he had been given and when he could take them again. At that moment, our little monster piped up with "Excuse me you two, could you hold it down please. I'm trying to sleep over here." I didn't know whether to laugh, cry, or choke him.
The next day, after arriving at the reception hall, my husband gave our son a breathing treatment on the tailgate of our truck. Thank goodness he gave him one before going in because he was a moving, grooving, boogie down dancer. He danced by himself, with brides maids, with other kids, with adults, with men, with women, basically, with anyone who would join him. He had a blast. As a result, he got coughing jags. None too serious though. My brother expressed concern that he was so busy and kept coughing. I told him if he could calm him down to feel free, it would be helpful. So for awhile, he played on his Kindle Fire with his uncle. Before heading for home, we gave him another breathing treatment on the tailgate of the truck. We survived! It was a beautiful wedding. My sister was GORGEOUS! We all had fun.
Living with a child like ours often feels like a balancing act. You want to keep them safe and healthy. At the same time, too much "safety" and "prevention" can stifle the potential that child might otherwise achieve. I want the best for him. I want him healthy and strong but I also want him to be free to experience life and live fully with the joy that comes so naturally to him. Lord, help me find that balance. Help me know when to hold him back and when to set him free. He'll find the joy wherever he goes. I just need to allow him the opportunities to find it.
Sunday, March 24, 2013
Central Auditory Processing Disorder
As discussed previously, we met as a team a few weeks ago to discuss possible courses of action to help our youngest son become more successful in school. One recommendation was that we have him tested for a central auditory processing disorder (CAPD). I had my reservations about opening another potential Pandora's box. When we started this journey, our son was nine months old. I promised myself then that I would leave no stone unturned if it would help him. Whatever the inconvenience or expense, if it would benefit him, we would give it a try.
Our journey once again involved a series of specialist appointments and tests. The first appointment was a full audiology physical. Our son got a kick out of seeing the inside of his ears on a computer screen. He enjoyed the digitalizing of what he was hearing. He did not like the "box" or the sound proof booth they used to administer his hearing assessment. Our son is very social and hates to be by himself. In spite of his aversion to the "box", he was very cooperative. All the tests at this appointment showed that he had normal ear structures and normal hearing.
It was important that they identified that his hearing was normal. Children with CAPD have normal hearing but are unable to pick out the important sounds within their environment. They have trouble focusing in noisy situations. These children are often overwhelmed or upset by noise and confusion. In addition, they often have trouble distinguishing between different sounds; remembering complex or multi-step directions; or completing higher level auditory skills. Our son struggles in these areas... but so do many children with attention deficit disorder (ADD).
The next two appointments involved a series of tests to determine whether he had difficulty picking out words or sounds in a noisy environment. They tested this in several different ways over two different sessions. In the end, it was determined that he does indeed have trouble decoding sounds. In other words, he has trouble identifying what is important to focus on in noisy environments. Because he has been diagnosed with ADD, they cannot definitively say it is just a decoding issue due to CAPD. They feel part of his struggle in school is related to this issue though.
So what do we do about it? The specialists have a series of recommendations for us at home and at school. They are awaiting insurance approval to fit him with an FM system. It includes a pair of tiny hearing aid type devices that he wears at school or in situations where he needs to focus on what is being said. The teacher/speaker wears a little microphone device that sends his/her voice directly to our son. He will be able to hear other sounds within the environment but the speaker's voice will now be the most noticeable. This will give him the ability to focus in on what is being taught instead of being distracted by the sounds around him.
The audiologists that we are working with questioned how severe his stuttering can become. We told them that at times it is very mild but at other times it can become moderate to severe. They told us that they don't know of any research to back it up, but their experience with the FM system they are recommending has shown a decrease in stuttering with the children who use it. They have also found it very useful to children who have ADD but not CAPD.
This latest journey leaves us with some hope that things will get easier for him in the classroom. It also leaves us with many questions. Will he achieve success with their recommendations? Will success with this system make him less of a target for other kids because he will be less different or more of a target because he is different by using this system? Will he outgrow the need for this system? Children with CAPD tend to outgrow the problem as their neuro pathways grow and develop. Is this the answers we have been looking for or just another piece of the puzzle?
School testing with the guidance counselor shows he has average cognitive skills yet he fails to show progress. This inability to perform at his true potential in spite of every one's best efforts, including his, leaves everyone a bit frustrated. The school also want us to have him assessed for a functional vision disorder. Will this be a wild goose chase with unnecessary expense or will it be another piece of the puzzle? We will wait and see this summer. For now, he needs a break from appointments and assessments. So do we.
I don't want to look back someday and ask myself, did I do enough to help him succeed? Did I do everything within my power to help him reach his true potential? I don't want him to look back someday and question why I didn't do my best for him. So I will. I will read and research and question. I will find the time, the energy and the money. I will do what it takes to help him. Along the way, we will laugh at the stupid decisions, the dead ends, and the false starts. They are all just part of the journey. We'll get where we need to go. In God's time, we'll get there.
For more on central auditory processing disorders, go to http://kidshealth.org/parent/medical/ears/central_auditory.html
Our journey once again involved a series of specialist appointments and tests. The first appointment was a full audiology physical. Our son got a kick out of seeing the inside of his ears on a computer screen. He enjoyed the digitalizing of what he was hearing. He did not like the "box" or the sound proof booth they used to administer his hearing assessment. Our son is very social and hates to be by himself. In spite of his aversion to the "box", he was very cooperative. All the tests at this appointment showed that he had normal ear structures and normal hearing.
It was important that they identified that his hearing was normal. Children with CAPD have normal hearing but are unable to pick out the important sounds within their environment. They have trouble focusing in noisy situations. These children are often overwhelmed or upset by noise and confusion. In addition, they often have trouble distinguishing between different sounds; remembering complex or multi-step directions; or completing higher level auditory skills. Our son struggles in these areas... but so do many children with attention deficit disorder (ADD).
The next two appointments involved a series of tests to determine whether he had difficulty picking out words or sounds in a noisy environment. They tested this in several different ways over two different sessions. In the end, it was determined that he does indeed have trouble decoding sounds. In other words, he has trouble identifying what is important to focus on in noisy environments. Because he has been diagnosed with ADD, they cannot definitively say it is just a decoding issue due to CAPD. They feel part of his struggle in school is related to this issue though.
So what do we do about it? The specialists have a series of recommendations for us at home and at school. They are awaiting insurance approval to fit him with an FM system. It includes a pair of tiny hearing aid type devices that he wears at school or in situations where he needs to focus on what is being said. The teacher/speaker wears a little microphone device that sends his/her voice directly to our son. He will be able to hear other sounds within the environment but the speaker's voice will now be the most noticeable. This will give him the ability to focus in on what is being taught instead of being distracted by the sounds around him.
The audiologists that we are working with questioned how severe his stuttering can become. We told them that at times it is very mild but at other times it can become moderate to severe. They told us that they don't know of any research to back it up, but their experience with the FM system they are recommending has shown a decrease in stuttering with the children who use it. They have also found it very useful to children who have ADD but not CAPD.
This latest journey leaves us with some hope that things will get easier for him in the classroom. It also leaves us with many questions. Will he achieve success with their recommendations? Will success with this system make him less of a target for other kids because he will be less different or more of a target because he is different by using this system? Will he outgrow the need for this system? Children with CAPD tend to outgrow the problem as their neuro pathways grow and develop. Is this the answers we have been looking for or just another piece of the puzzle?
School testing with the guidance counselor shows he has average cognitive skills yet he fails to show progress. This inability to perform at his true potential in spite of every one's best efforts, including his, leaves everyone a bit frustrated. The school also want us to have him assessed for a functional vision disorder. Will this be a wild goose chase with unnecessary expense or will it be another piece of the puzzle? We will wait and see this summer. For now, he needs a break from appointments and assessments. So do we.
I don't want to look back someday and ask myself, did I do enough to help him succeed? Did I do everything within my power to help him reach his true potential? I don't want him to look back someday and question why I didn't do my best for him. So I will. I will read and research and question. I will find the time, the energy and the money. I will do what it takes to help him. Along the way, we will laugh at the stupid decisions, the dead ends, and the false starts. They are all just part of the journey. We'll get where we need to go. In God's time, we'll get there.
For more on central auditory processing disorders, go to http://kidshealth.org/parent/medical/ears/central_auditory.html
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