"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.
Saturday, April 20, 2013
Tuesday, April 9, 2013
Traveling With An Asthmatic
I wake from a sound sleep wondering what has startled me awake. Then I hear it, that choking gasping sound coming through the monitor. My youngest son may be seven but we still keep a baby monitor in his room for moments just like these. Unfortunately, these moments have been almost a nightly occurrence for the last month and a half. He has been in an asthma flair for nearly six weeks with no end in sight.
Our son's primary doctor identified that his right ear is infected. Has been infected. Over the last six weeks, he has been on Prednisone, an oral steroid, and he has been prescribed three different antibiotics. These medicines are in addition to his regular preventative medicines (Singulair, Flovent, Omneprazole, and Loratadine) that he takes on a daily basis. During flairs like this, we also use his Albuterol nebulizer every four hours, round the clock. In addition, saline spray is used to moisten his nasal cavities and wash out any bacteria that may be trying to grow there; the head end of his bed is elevated on blocks; and a humidifier adds moisture to the air and his sinuses. This is all part of our regular routine. We are used to this. It's what we do to survive life with our son.
Unfortunately, this time, none of it seems to be working. His primary doctor was at a loss for what to do so he put in an emergency consult with our son's pulmonary specialist. After going to see the pulmonary specialist, he was at a loss of what to do, so he put in a referral to the ear, nose, and throat specialist and the gastrointestinal specialist. In the meantime, his pulmonary doctor prescribed a month of Bactrim at the highest dosage and an increase in his Omneprazole. He fears that our son may need another set of ear tubes (he has had three prior sets). He also fears that he may need his tonsils removed (his adenoids were removed when the last set of ear tubes were put in). His biggest fear though is that the root of all of these issues may be reflux that is not being controlled by his current medications. Reflux is the primary cause of asthma in children. If reflux is the main problem, all we have been doing is the equivalent of putting a bandaid on an open wound. Until the other specialists can determine a definitive causation, he wants him on the Bactrim long term to control current infection; to prevent further infection; and to help the cilia in his sinuses begin to regrow. Life with this boy often seems like the children's book If You Give A Mouse A Cookie but instead it's If You Give A Doctor A Symptom.
During the midst of this current flair, my sister was getting married two hours from our home. I was dreading this event, not because of the wedding itself, but because we were taking our son along in his current state. Those of you that have had to travel with a serious asthmatic know that it is a practice in strategizing and planning. It's a challenge to remember to pack all the medicines and all the "gear". For example, we have a converter for our truck so that we can have electricity to power our son's nebulizer anywhere we go. This comes in really handy when traveling long distances or traveling where you aren't sure of an electrical supply. We also keep an emergency box stocked with all the supplies needed to treat the symptoms associated with such a flair. After making lists, packing, planning, and trying to think of worse case scenarios, I felt fairly confident that we could weather this without too many issues.
Fortunately, it went just about as planned. I forgot to factor in the fact that he was on Prednisone and would be contained to hotel rooms, churches and reception halls. That combined with his excitement for the event equaled manicness!!! He was like a ping pong ball set loose.
Thankfully we had rented a suite at the hotel because at 1:30 am, he woke with one of his gagging/choking/wheezing spells. Not wanting to wake his older brother who was sleeping on the pull out couch in the other room, I stumbled through the kitchen using my cell phone as my flashlight, trying to locate his emergency kit. After finding it, I took it into our room where I climbed into bed with him to get him sitting upright and administered his breathing treatment. My husband sat on the edge of the bed holding the nebulizer machine so the vibrations of this noisy piece of equipment wouldn't wake our older son or other patrons in other rooms. When the treatment was over and I had him settled back into bed, I verbally started going through my checklist of medications that he had been given and when he could take them again. At that moment, our little monster piped up with "Excuse me you two, could you hold it down please. I'm trying to sleep over here." I didn't know whether to laugh, cry, or choke him.
The next day, after arriving at the reception hall, my husband gave our son a breathing treatment on the tailgate of our truck. Thank goodness he gave him one before going in because he was a moving, grooving, boogie down dancer. He danced by himself, with brides maids, with other kids, with adults, with men, with women, basically, with anyone who would join him. He had a blast. As a result, he got coughing jags. None too serious though. My brother expressed concern that he was so busy and kept coughing. I told him if he could calm him down to feel free, it would be helpful. So for awhile, he played on his Kindle Fire with his uncle. Before heading for home, we gave him another breathing treatment on the tailgate of the truck. We survived! It was a beautiful wedding. My sister was GORGEOUS! We all had fun.
Living with a child like ours often feels like a balancing act. You want to keep them safe and healthy. At the same time, too much "safety" and "prevention" can stifle the potential that child might otherwise achieve. I want the best for him. I want him healthy and strong but I also want him to be free to experience life and live fully with the joy that comes so naturally to him. Lord, help me find that balance. Help me know when to hold him back and when to set him free. He'll find the joy wherever he goes. I just need to allow him the opportunities to find it.
Our son's primary doctor identified that his right ear is infected. Has been infected. Over the last six weeks, he has been on Prednisone, an oral steroid, and he has been prescribed three different antibiotics. These medicines are in addition to his regular preventative medicines (Singulair, Flovent, Omneprazole, and Loratadine) that he takes on a daily basis. During flairs like this, we also use his Albuterol nebulizer every four hours, round the clock. In addition, saline spray is used to moisten his nasal cavities and wash out any bacteria that may be trying to grow there; the head end of his bed is elevated on blocks; and a humidifier adds moisture to the air and his sinuses. This is all part of our regular routine. We are used to this. It's what we do to survive life with our son.
Unfortunately, this time, none of it seems to be working. His primary doctor was at a loss for what to do so he put in an emergency consult with our son's pulmonary specialist. After going to see the pulmonary specialist, he was at a loss of what to do, so he put in a referral to the ear, nose, and throat specialist and the gastrointestinal specialist. In the meantime, his pulmonary doctor prescribed a month of Bactrim at the highest dosage and an increase in his Omneprazole. He fears that our son may need another set of ear tubes (he has had three prior sets). He also fears that he may need his tonsils removed (his adenoids were removed when the last set of ear tubes were put in). His biggest fear though is that the root of all of these issues may be reflux that is not being controlled by his current medications. Reflux is the primary cause of asthma in children. If reflux is the main problem, all we have been doing is the equivalent of putting a bandaid on an open wound. Until the other specialists can determine a definitive causation, he wants him on the Bactrim long term to control current infection; to prevent further infection; and to help the cilia in his sinuses begin to regrow. Life with this boy often seems like the children's book If You Give A Mouse A Cookie but instead it's If You Give A Doctor A Symptom.
During the midst of this current flair, my sister was getting married two hours from our home. I was dreading this event, not because of the wedding itself, but because we were taking our son along in his current state. Those of you that have had to travel with a serious asthmatic know that it is a practice in strategizing and planning. It's a challenge to remember to pack all the medicines and all the "gear". For example, we have a converter for our truck so that we can have electricity to power our son's nebulizer anywhere we go. This comes in really handy when traveling long distances or traveling where you aren't sure of an electrical supply. We also keep an emergency box stocked with all the supplies needed to treat the symptoms associated with such a flair. After making lists, packing, planning, and trying to think of worse case scenarios, I felt fairly confident that we could weather this without too many issues.
Fortunately, it went just about as planned. I forgot to factor in the fact that he was on Prednisone and would be contained to hotel rooms, churches and reception halls. That combined with his excitement for the event equaled manicness!!! He was like a ping pong ball set loose.
Thankfully we had rented a suite at the hotel because at 1:30 am, he woke with one of his gagging/choking/wheezing spells. Not wanting to wake his older brother who was sleeping on the pull out couch in the other room, I stumbled through the kitchen using my cell phone as my flashlight, trying to locate his emergency kit. After finding it, I took it into our room where I climbed into bed with him to get him sitting upright and administered his breathing treatment. My husband sat on the edge of the bed holding the nebulizer machine so the vibrations of this noisy piece of equipment wouldn't wake our older son or other patrons in other rooms. When the treatment was over and I had him settled back into bed, I verbally started going through my checklist of medications that he had been given and when he could take them again. At that moment, our little monster piped up with "Excuse me you two, could you hold it down please. I'm trying to sleep over here." I didn't know whether to laugh, cry, or choke him.
The next day, after arriving at the reception hall, my husband gave our son a breathing treatment on the tailgate of our truck. Thank goodness he gave him one before going in because he was a moving, grooving, boogie down dancer. He danced by himself, with brides maids, with other kids, with adults, with men, with women, basically, with anyone who would join him. He had a blast. As a result, he got coughing jags. None too serious though. My brother expressed concern that he was so busy and kept coughing. I told him if he could calm him down to feel free, it would be helpful. So for awhile, he played on his Kindle Fire with his uncle. Before heading for home, we gave him another breathing treatment on the tailgate of the truck. We survived! It was a beautiful wedding. My sister was GORGEOUS! We all had fun.
Living with a child like ours often feels like a balancing act. You want to keep them safe and healthy. At the same time, too much "safety" and "prevention" can stifle the potential that child might otherwise achieve. I want the best for him. I want him healthy and strong but I also want him to be free to experience life and live fully with the joy that comes so naturally to him. Lord, help me find that balance. Help me know when to hold him back and when to set him free. He'll find the joy wherever he goes. I just need to allow him the opportunities to find it.
Sunday, March 24, 2013
Central Auditory Processing Disorder
As discussed previously, we met as a team a few weeks ago to discuss possible courses of action to help our youngest son become more successful in school. One recommendation was that we have him tested for a central auditory processing disorder (CAPD). I had my reservations about opening another potential Pandora's box. When we started this journey, our son was nine months old. I promised myself then that I would leave no stone unturned if it would help him. Whatever the inconvenience or expense, if it would benefit him, we would give it a try.
Our journey once again involved a series of specialist appointments and tests. The first appointment was a full audiology physical. Our son got a kick out of seeing the inside of his ears on a computer screen. He enjoyed the digitalizing of what he was hearing. He did not like the "box" or the sound proof booth they used to administer his hearing assessment. Our son is very social and hates to be by himself. In spite of his aversion to the "box", he was very cooperative. All the tests at this appointment showed that he had normal ear structures and normal hearing.
It was important that they identified that his hearing was normal. Children with CAPD have normal hearing but are unable to pick out the important sounds within their environment. They have trouble focusing in noisy situations. These children are often overwhelmed or upset by noise and confusion. In addition, they often have trouble distinguishing between different sounds; remembering complex or multi-step directions; or completing higher level auditory skills. Our son struggles in these areas... but so do many children with attention deficit disorder (ADD).
The next two appointments involved a series of tests to determine whether he had difficulty picking out words or sounds in a noisy environment. They tested this in several different ways over two different sessions. In the end, it was determined that he does indeed have trouble decoding sounds. In other words, he has trouble identifying what is important to focus on in noisy environments. Because he has been diagnosed with ADD, they cannot definitively say it is just a decoding issue due to CAPD. They feel part of his struggle in school is related to this issue though.
So what do we do about it? The specialists have a series of recommendations for us at home and at school. They are awaiting insurance approval to fit him with an FM system. It includes a pair of tiny hearing aid type devices that he wears at school or in situations where he needs to focus on what is being said. The teacher/speaker wears a little microphone device that sends his/her voice directly to our son. He will be able to hear other sounds within the environment but the speaker's voice will now be the most noticeable. This will give him the ability to focus in on what is being taught instead of being distracted by the sounds around him.
The audiologists that we are working with questioned how severe his stuttering can become. We told them that at times it is very mild but at other times it can become moderate to severe. They told us that they don't know of any research to back it up, but their experience with the FM system they are recommending has shown a decrease in stuttering with the children who use it. They have also found it very useful to children who have ADD but not CAPD.
This latest journey leaves us with some hope that things will get easier for him in the classroom. It also leaves us with many questions. Will he achieve success with their recommendations? Will success with this system make him less of a target for other kids because he will be less different or more of a target because he is different by using this system? Will he outgrow the need for this system? Children with CAPD tend to outgrow the problem as their neuro pathways grow and develop. Is this the answers we have been looking for or just another piece of the puzzle?
School testing with the guidance counselor shows he has average cognitive skills yet he fails to show progress. This inability to perform at his true potential in spite of every one's best efforts, including his, leaves everyone a bit frustrated. The school also want us to have him assessed for a functional vision disorder. Will this be a wild goose chase with unnecessary expense or will it be another piece of the puzzle? We will wait and see this summer. For now, he needs a break from appointments and assessments. So do we.
I don't want to look back someday and ask myself, did I do enough to help him succeed? Did I do everything within my power to help him reach his true potential? I don't want him to look back someday and question why I didn't do my best for him. So I will. I will read and research and question. I will find the time, the energy and the money. I will do what it takes to help him. Along the way, we will laugh at the stupid decisions, the dead ends, and the false starts. They are all just part of the journey. We'll get where we need to go. In God's time, we'll get there.
For more on central auditory processing disorders, go to http://kidshealth.org/parent/medical/ears/central_auditory.html
Our journey once again involved a series of specialist appointments and tests. The first appointment was a full audiology physical. Our son got a kick out of seeing the inside of his ears on a computer screen. He enjoyed the digitalizing of what he was hearing. He did not like the "box" or the sound proof booth they used to administer his hearing assessment. Our son is very social and hates to be by himself. In spite of his aversion to the "box", he was very cooperative. All the tests at this appointment showed that he had normal ear structures and normal hearing.
It was important that they identified that his hearing was normal. Children with CAPD have normal hearing but are unable to pick out the important sounds within their environment. They have trouble focusing in noisy situations. These children are often overwhelmed or upset by noise and confusion. In addition, they often have trouble distinguishing between different sounds; remembering complex or multi-step directions; or completing higher level auditory skills. Our son struggles in these areas... but so do many children with attention deficit disorder (ADD).
The next two appointments involved a series of tests to determine whether he had difficulty picking out words or sounds in a noisy environment. They tested this in several different ways over two different sessions. In the end, it was determined that he does indeed have trouble decoding sounds. In other words, he has trouble identifying what is important to focus on in noisy environments. Because he has been diagnosed with ADD, they cannot definitively say it is just a decoding issue due to CAPD. They feel part of his struggle in school is related to this issue though.
So what do we do about it? The specialists have a series of recommendations for us at home and at school. They are awaiting insurance approval to fit him with an FM system. It includes a pair of tiny hearing aid type devices that he wears at school or in situations where he needs to focus on what is being said. The teacher/speaker wears a little microphone device that sends his/her voice directly to our son. He will be able to hear other sounds within the environment but the speaker's voice will now be the most noticeable. This will give him the ability to focus in on what is being taught instead of being distracted by the sounds around him.
The audiologists that we are working with questioned how severe his stuttering can become. We told them that at times it is very mild but at other times it can become moderate to severe. They told us that they don't know of any research to back it up, but their experience with the FM system they are recommending has shown a decrease in stuttering with the children who use it. They have also found it very useful to children who have ADD but not CAPD.
This latest journey leaves us with some hope that things will get easier for him in the classroom. It also leaves us with many questions. Will he achieve success with their recommendations? Will success with this system make him less of a target for other kids because he will be less different or more of a target because he is different by using this system? Will he outgrow the need for this system? Children with CAPD tend to outgrow the problem as their neuro pathways grow and develop. Is this the answers we have been looking for or just another piece of the puzzle?
School testing with the guidance counselor shows he has average cognitive skills yet he fails to show progress. This inability to perform at his true potential in spite of every one's best efforts, including his, leaves everyone a bit frustrated. The school also want us to have him assessed for a functional vision disorder. Will this be a wild goose chase with unnecessary expense or will it be another piece of the puzzle? We will wait and see this summer. For now, he needs a break from appointments and assessments. So do we.
I don't want to look back someday and ask myself, did I do enough to help him succeed? Did I do everything within my power to help him reach his true potential? I don't want him to look back someday and question why I didn't do my best for him. So I will. I will read and research and question. I will find the time, the energy and the money. I will do what it takes to help him. Along the way, we will laugh at the stupid decisions, the dead ends, and the false starts. They are all just part of the journey. We'll get where we need to go. In God's time, we'll get there.
For more on central auditory processing disorders, go to http://kidshealth.org/parent/medical/ears/central_auditory.html
Friday, February 15, 2013
Renewed Hope
As I have eluded to in recent posts, our little man hasn't been making as much progress in therapy or at school as we had hoped. He was frustrated. The educational team was somewhat perplexed and a tad frustrated. His father and I were flat out exhausted. We felt like we had pursued all avenues and shaken all the bushes with little to show for it. What more could we all be doing?
Today we met with the educational and therapeutic team. It was very very productive. Apparently the neurology report we had taken into school back in November had been placed in his file but never been passed along to the educational team for review. When they located the latest neuro report, they discovered that our son had been diagnosed with attention deficit disorder (ADD) and an evaluation for a language based learning disability had been strongly recommended. From a school standpoint, this opened all kinds of doors. He now qualifies for academic based goals instead of just speech, occupational therapy and physical therapy based goals. The types of services and teaching tools that can now be utilized has been expanded dramatically. A timeline was discussed for implementing his new goals and arranging new evaluations. New doors were opened.
We also discussed the need to have him evaluated for a central auditory processing disorder by a specialized audiologist. They would also like us to pursue having him evaluated for a functional vision disorder by a specialized pediatric optometrist. These evaluations may be able to pinpoint the source of his processing issues. If they can't identify a causation, they can at least narrow down the possibilities. New direction. Maybe some answers.
The assembled team included the special education director of the school district (and mother of a special needs child), his occupational therapist and her supervisor, his speech therapist, his teacher, and his Dad and I. We were able to discuss our concerns and needs as a team with everyone present for the first time. At his individualized education plan (IEP) meeting, several of these members had been missing. As a result, needed information was not passed along. At this meeting, everyone was there and obviously concerned and invested in helping our son meet his goals. His teacher requested communication between the therapy team and himself so that he can better implement their ideas and techniques in the classroom. Emails and phone numbers were exchanged for faster and more effective communication. Communication was improved. More effective goals identified.
As his parents, we were able to shed light on some of the issues that had begun to develop at school. We were able to identify that our son, who had always seen himself as awesome and amazing, was now starting to recognize that he was different from his peers. He is terribly frustrated with himself and his circumstances at the moment. There isn't anything that we as the assembled team can do for him other than help him navigate this time. It is part of the growing process when you have the learning and developmental issues that he has. But this knowledge helped identify why he was becoming resistant to eating in the cafeteria; or being separated from his peers to go to therapy; or seeking approval from his classmates when before he was content to march to his own little drum. Behaviors that they had seen or been concerned with now made more sense. Our sons motivations were identified and clarified. Better understanding and empathy was developed.
We were able to explain what our evenings were like with a kiddo who holds it together all day because he wants to fit in and make everyone happy but explodes upon getting home. They said this is normal for children with his issues. Once the kiddos are home where they feel loved and protected, they feel safe enough to release the frustration they have held in all day at school. The special education director, who has navigated these waters with her own son, also identified that part of his exhaustion by the end of a day/week was also normal. Every single thing he does in a day is still a purposeful, cognitive decision. While most of us learn to do simple life tasks on auto pilot, children like ours still have to think their way through these same seemingly simple tasks. Of course they are tired by the end of a day/week. As a team, we were able to identify some "hot spots" for us and problem solve some possible solutions. Although we felt as if these issues didn't really apply to school, they assured us that they do because if he is struggling with basic self help skills like feeding himself or buttoning a button fly pair of jeans, that takes away energy and effort that could be devoted to learning. If he is feeling unsure of himself and where he fits into the school environment, he is less focused on learning. They provided us with a measure of peace and a feeling that we weren't alone in this journey.
My husband and I are both problem solvers. We approach life with a "identify the problem and fix it" mentality. Our son is one "problem" that we haven't been able to "fix". The process of helping him adapt to a life that wasn't designed for people like him has been nothing short of physically and emotionally exhausting. Today we found new hope. We found new avenues to pursue. We discovered that there was a team of people who truly care about our child and want him to succeed just as we do. I believe this. And once again, I am presented with the life lesson that I must wait patiently for God's time, not my own. He will provide answers and solutions when the time is right. Is our son "fixed"? No. Will he ever be completely "fixed"? I don't know. Today has increased my faith that maybe in God's time we will have greater answers and understanding. He has a plan for our amazing little man. Someday, we'll know what it is and look back and say "Thank you Lord for your providence."
Today we met with the educational and therapeutic team. It was very very productive. Apparently the neurology report we had taken into school back in November had been placed in his file but never been passed along to the educational team for review. When they located the latest neuro report, they discovered that our son had been diagnosed with attention deficit disorder (ADD) and an evaluation for a language based learning disability had been strongly recommended. From a school standpoint, this opened all kinds of doors. He now qualifies for academic based goals instead of just speech, occupational therapy and physical therapy based goals. The types of services and teaching tools that can now be utilized has been expanded dramatically. A timeline was discussed for implementing his new goals and arranging new evaluations. New doors were opened.
We also discussed the need to have him evaluated for a central auditory processing disorder by a specialized audiologist. They would also like us to pursue having him evaluated for a functional vision disorder by a specialized pediatric optometrist. These evaluations may be able to pinpoint the source of his processing issues. If they can't identify a causation, they can at least narrow down the possibilities. New direction. Maybe some answers.
The assembled team included the special education director of the school district (and mother of a special needs child), his occupational therapist and her supervisor, his speech therapist, his teacher, and his Dad and I. We were able to discuss our concerns and needs as a team with everyone present for the first time. At his individualized education plan (IEP) meeting, several of these members had been missing. As a result, needed information was not passed along. At this meeting, everyone was there and obviously concerned and invested in helping our son meet his goals. His teacher requested communication between the therapy team and himself so that he can better implement their ideas and techniques in the classroom. Emails and phone numbers were exchanged for faster and more effective communication. Communication was improved. More effective goals identified.
As his parents, we were able to shed light on some of the issues that had begun to develop at school. We were able to identify that our son, who had always seen himself as awesome and amazing, was now starting to recognize that he was different from his peers. He is terribly frustrated with himself and his circumstances at the moment. There isn't anything that we as the assembled team can do for him other than help him navigate this time. It is part of the growing process when you have the learning and developmental issues that he has. But this knowledge helped identify why he was becoming resistant to eating in the cafeteria; or being separated from his peers to go to therapy; or seeking approval from his classmates when before he was content to march to his own little drum. Behaviors that they had seen or been concerned with now made more sense. Our sons motivations were identified and clarified. Better understanding and empathy was developed.
We were able to explain what our evenings were like with a kiddo who holds it together all day because he wants to fit in and make everyone happy but explodes upon getting home. They said this is normal for children with his issues. Once the kiddos are home where they feel loved and protected, they feel safe enough to release the frustration they have held in all day at school. The special education director, who has navigated these waters with her own son, also identified that part of his exhaustion by the end of a day/week was also normal. Every single thing he does in a day is still a purposeful, cognitive decision. While most of us learn to do simple life tasks on auto pilot, children like ours still have to think their way through these same seemingly simple tasks. Of course they are tired by the end of a day/week. As a team, we were able to identify some "hot spots" for us and problem solve some possible solutions. Although we felt as if these issues didn't really apply to school, they assured us that they do because if he is struggling with basic self help skills like feeding himself or buttoning a button fly pair of jeans, that takes away energy and effort that could be devoted to learning. If he is feeling unsure of himself and where he fits into the school environment, he is less focused on learning. They provided us with a measure of peace and a feeling that we weren't alone in this journey.
My husband and I are both problem solvers. We approach life with a "identify the problem and fix it" mentality. Our son is one "problem" that we haven't been able to "fix". The process of helping him adapt to a life that wasn't designed for people like him has been nothing short of physically and emotionally exhausting. Today we found new hope. We found new avenues to pursue. We discovered that there was a team of people who truly care about our child and want him to succeed just as we do. I believe this. And once again, I am presented with the life lesson that I must wait patiently for God's time, not my own. He will provide answers and solutions when the time is right. Is our son "fixed"? No. Will he ever be completely "fixed"? I don't know. Today has increased my faith that maybe in God's time we will have greater answers and understanding. He has a plan for our amazing little man. Someday, we'll know what it is and look back and say "Thank you Lord for your providence."
Tuesday, February 12, 2013
Life's Always A Choice
Our son turned seven on Friday. It has been a long journey filled with stress, heartache and joy.
At the end of the first semester of first grade, things aren't looking as rosy as we had hoped. His occupational therapist has asked us to "take a break" from therapy for awhile because he is failing to meet his therapy goals. She thinks he's frustrated with the process and needs a break from it. His teacher has requested a meeting with ourselves and the therapy team at school because he isn't meeting his goals there either. We are dealing with a very frustrated young man these days. As a result, he's not always a barrel of laughs to live with. In light of that, and in celebration of his birthday, I'm choosing to focus on the fun. The following are just a handful of reasons that life is better, more fun, and definitely more interesting with our little monster in it.
At the end of the first semester of first grade, things aren't looking as rosy as we had hoped. His occupational therapist has asked us to "take a break" from therapy for awhile because he is failing to meet his therapy goals. She thinks he's frustrated with the process and needs a break from it. His teacher has requested a meeting with ourselves and the therapy team at school because he isn't meeting his goals there either. We are dealing with a very frustrated young man these days. As a result, he's not always a barrel of laughs to live with. In light of that, and in celebration of his birthday, I'm choosing to focus on the fun. The following are just a handful of reasons that life is better, more fun, and definitely more interesting with our little monster in it.
- His brother says his favorite thing about his little brother is that he can make friends with anyone, anywhere, at any time. For example, when we went to a Crosscutters baseball game this summer, our son adopted the bus driver for the opposing team. He was a very large, somewhat imposing figure of a man. Our son "arrested" him; put his hands behind his back; and put him in jail with all the other "bad guys" he had arrested. Bless his heart! The poor guy played along.
- His father says our son has the funniest little antics or methods of dealing with the challenges that life has thrown at him. His poor motor skills interfere with him doing simple tasks like opening a yogurt tube. His hands are too big and clumsy. Instead, he has learned that he can grab the corner with his teeth and tear the top open. Success!
- Our son is a first class little Romeo. He blatantly flirts with girls/women much older than him... and they fall for it! One afternoon when we went to a local shoe store, he ended up following this cute little blond around the store making eyes at her and declaring "She's stalking me!" At the checkout, we ran into them again and she laughed and laughed. She thought he was adorable.
- One of my favorite things is coming into the living room and finding the boys curled up on the couch together reading a story or watching a show on TV. Our youngest absolutely loves and adores his big brother.
- Our little man always wants everyone included in everything he does. If he gets a snack from his grandmother, he has to be sure to get one for his brother. When he gets a sticker from the doctor, he always wants one for his brother and his Dad.
- He is the defender of the underdog. If someone is in trouble, he has to come to their defense, even if they are blatantly in the wrong. When I told his father that he was too sick to go to work because he needed to stay home and rest, our son strongly defended him. "Let him go to work!" At times, our oldest will tell his brother "No buddy. Mom and Dad are right to tell me that. I was wrong." (Thank God we have a wonderful older son who is so responsible!)
- While completing homework, especially reading his reading book together, he often falls asleep. If he falls asleep and we can't wake him back up, we go ahead and put him in bed for the night. He will groggily ask "Can I brush my teeth twice tomorrow?" Yes little man, you brush your teeth twice everyday.
- This year on Groundhogs Day, he told his grandparents that if the "beaver" saw his shadow it would be an early "summer". He has been very offended that it keeps snowing and now he thinks the "beaver" is a liar.
Friday, January 18, 2013
You've Just Got to Love Him
As we walk into one of our favorite restaurants, the owner steps out from behind the kitchen area to come greet us. He and my youngest son had become buddies through our different trips to the creamery. When we walked in the door, the owner bellowed "How's it going big daddy?" My son looked back with a huge smile and said "There's my big buddy." He then ran up to the counter, high-fived the owner, and proceeded to order his supper. Part way through eating his supper, he informs the owner that he wanted cheese on his hot dog. He and the owner have a conversation about Cheez Wiz before he wanders off to heat up a "special bowl of cheese for his little buddy". After returning to our table, he dollops spoons of melted cheese over the hot dog and informs him that the extra should be used to dip his chips in.
This is a very typical evening out with our son. Everywhere we go, everyone seems to know and love him. If they don't know him, they soon will. He totally lacks boundaries. You will become his friend because he leaves you no choice. We have attended several family reunions or social functions where we knew hardly anyone in attendance. Within moments of our arrival, he manages to introduce himself and engage even the most standoffish individuals in conversation. His specialty is grumpy old men who like to hide by themselves in corners. He wanders over, sits down beside them and starts chatting them up as if they were old buddies. I used to worry that he was bothering people. Now I just stand back and watch him work his magic. By the end of the afternoon, he is hugging and kissing people goodbye who were complete strangers only a few hours before.
I worry about his same age peers though. Kids can be very cruel. They haven't developed the filters that we adults often utilize. They say what comes to mind. When he was younger, it was less apparent that he lagged behind his same age peers. He is now at an age though where he is taller and bigger than kids his age yet it is starting to become more obvious that he lags behind them developmentally. Some of his peers have encouraged him to do things and say things that ended up getting him in trouble at school. Because of his lack of boundaries, he doesn't always recognize that other kids his age don't want to be hugged or kissed or pulled on to get their attention. I fear that he will be seen as "that strange kid" that the others tease or make fun of.
There are signs that he is starting to recognize that there are some differences between him and his peers. He displays some subtle behavior shifts that show a rising awareness of the differences. He is developing a greater resistance to attending his occupational therapy sessions. His therapist voiced that he doesn't understand why he needs to keep coming to OT because he doesn't see himself as different from his peers. He definitely has a need for the services because he isn't meeting his therapy goals. I think his resistance has more to do with the fact that he is starting to see the difference between him and his peers. My heart aches for this transition/transformation. He is NOT dumb or slow intellectually. Unfortunately, his body will not let him express himself they way his same age peers can. There is an extremely bright child trapped inside a body that will not cooperate to move or speak the way he wants it to. To then recognize that others see him as different, must be frustrating beyond belief. I can't do anything to help him except offer my love and support. This is something he must learn and survive.
I have little fear for our son long term. He will learn to overcome his expressive issues. He is too strong willed by nature to do otherwise. He will develop friendships and relationships with many people along the way. He is too social by nature to do otherwise. He will succeed in whatever he cares strongly about. He is too oppositional by nature to do otherwise. I just pray that he doesn't encounter too much heartache or disappointment along the way. Life has given him enough of that. I pray we know how to support him through these years of transition and trial. Please Lord, help our son grow and develop into the man that You want him to be. It's going to be quite a journey.
This is a very typical evening out with our son. Everywhere we go, everyone seems to know and love him. If they don't know him, they soon will. He totally lacks boundaries. You will become his friend because he leaves you no choice. We have attended several family reunions or social functions where we knew hardly anyone in attendance. Within moments of our arrival, he manages to introduce himself and engage even the most standoffish individuals in conversation. His specialty is grumpy old men who like to hide by themselves in corners. He wanders over, sits down beside them and starts chatting them up as if they were old buddies. I used to worry that he was bothering people. Now I just stand back and watch him work his magic. By the end of the afternoon, he is hugging and kissing people goodbye who were complete strangers only a few hours before.
I worry about his same age peers though. Kids can be very cruel. They haven't developed the filters that we adults often utilize. They say what comes to mind. When he was younger, it was less apparent that he lagged behind his same age peers. He is now at an age though where he is taller and bigger than kids his age yet it is starting to become more obvious that he lags behind them developmentally. Some of his peers have encouraged him to do things and say things that ended up getting him in trouble at school. Because of his lack of boundaries, he doesn't always recognize that other kids his age don't want to be hugged or kissed or pulled on to get their attention. I fear that he will be seen as "that strange kid" that the others tease or make fun of.
There are signs that he is starting to recognize that there are some differences between him and his peers. He displays some subtle behavior shifts that show a rising awareness of the differences. He is developing a greater resistance to attending his occupational therapy sessions. His therapist voiced that he doesn't understand why he needs to keep coming to OT because he doesn't see himself as different from his peers. He definitely has a need for the services because he isn't meeting his therapy goals. I think his resistance has more to do with the fact that he is starting to see the difference between him and his peers. My heart aches for this transition/transformation. He is NOT dumb or slow intellectually. Unfortunately, his body will not let him express himself they way his same age peers can. There is an extremely bright child trapped inside a body that will not cooperate to move or speak the way he wants it to. To then recognize that others see him as different, must be frustrating beyond belief. I can't do anything to help him except offer my love and support. This is something he must learn and survive.
I have little fear for our son long term. He will learn to overcome his expressive issues. He is too strong willed by nature to do otherwise. He will develop friendships and relationships with many people along the way. He is too social by nature to do otherwise. He will succeed in whatever he cares strongly about. He is too oppositional by nature to do otherwise. I just pray that he doesn't encounter too much heartache or disappointment along the way. Life has given him enough of that. I pray we know how to support him through these years of transition and trial. Please Lord, help our son grow and develop into the man that You want him to be. It's going to be quite a journey.
Friday, January 11, 2013
Learning to Find the Humor Again
I haven't written for quite awhile. Life had gotten very busy and my writing needed to take a backseat. Ironically, if anything, life has gotten even more hectic and complicated. In light of life's recent twists, turns, and obstacles, I decided to make the time to write. I may be the only one who reads this, but the writing of it is a cathartic practice that helps to put the chaos that is my world into its proper perspective.
Our youngest son has been in a developmental lag for longer than we have typically experienced in the past. It has all of us a bit stymied and frustrated. His occupational therapist says his focus is much improved from the past but his motivation is lacking. At school, they tell us he is very motivated to do well and actively participates but lacks focus. At home, he is exhausted and prone to tantrums because he is exhausted. At least once every couple weeks, he falls asleep soon after coming home from school and sleeps until the next morning. We can tell the day of the week based upon his frustration level and tendency for tantrums. The later in the week, the greater the likelihood a meltdown will occur.
My method of coping with stress is to utilize a dry sarcastic sense of humor. In recent months, I had a difficult time finding the humor in our son's behavior. It didn't seem to matter what I tried or how hard I worked, he didn't seem to be improving. With everything else that life has thrown at me, I just couldn't find the silver lining or the funny in the moments like I had in the past. I was frustrated. Why couldn't I help my own son? I was angry. I didn't sign up for this. Why couldn't he be like other kids his age? I was scared. What if he doesn't start to catch up with his peers? Will life always be this hard for him? For us?
I look at the person I was before our youngest son. There are things that I miss about that girl. She thought the world was hers to take. Nothing was out of reach with enough hard work and effort. Wow. What naivete, or was it optimism?
On the other hand, I look at that girl and there are things about her that sadden me. How judgmental she could be! She looked at other people's life experiences and judged them without knowing what their lives were really like. Wow. I'm so sorry for that.
That girl also thought she knew the Lord. But her understanding of the Lord was based on a girl who seemed to be standing with her hands on her hips saying "Here I am Lord. Here's what I deserve. I'm your follower. Now make it happen." Wow. What complacency and arrogance. I'm especially sorry for that.
Life with my youngest son has opened my eyes in so many ways. I discovered that it doesn't matter what life hands you. It is never going to be fair. Or easy. Or uncomplicated. That's not how life works. What does ultimately matter is how you handle it.
I may no longer be that naive or optimistic girl of my past. Indeed, I am much less likely to judge the life of those around me. Instead, I have been greatly humbled by life. It has taken my hearing. It has shown me weakness of body and spirit. It has shown me that I can't cure my son or make him better. I can't control what circumstances life brings me and my family.
I am once again beginning to see the humor in life with our youngest son. He exhausts me. He frustrates me. He also makes me laugh like crazy.
We argued over socks. An argument that involved twenty minutes of trying to rationally, calmly explain why socks must be worn; that the socks must be dry ones, not wet ones; and that they must match since I sent him to school with his sneakers on the wrong feet the day before. (I didn't want them to think I was a COMPLETE failure as a mother!) For twenty minutes, I was calm. For twenty minutes, I was patient. For twenty minutes, I was a good mother. After twenty minutes... I lost my mind and found myself hopping up and down and ranting "Put on some matching socks right this minute or I am going to lose my mind." Who can't find humor in moments of insanity like that?
When his father told him he couldn't go to the Atrium Cafe at the hospital after therapy, he lay down in the middle of the hospital, on the floor and held a civil protest. Minutes later, he jumped up and declared he was the "worstest father in the world". He then ran down the hall and disappeared out of sight. My husband found him hiding in a corner down the hospital corridor. Who can't find humor in such lunacy?
After a particularly nasty meltdown, we gave him a bath to help him calm himself down. The warm water seems to take all the frustration and aggression out of him. It almost always works. As he lay in the tub, finally calm and relaxed, his father attempted to process the tantrum with him. "Now don't you think instead of throwing a tantrum and yelling at us, you could just try talking to us?" Our son looks at him, strokes his chin in serious thought and replies "Hmm. I should try that." Who wouldn't laugh at that? Well, come to think of it, maybe not everyone. But when faced with moments like these on a regular basis, you learn to find the humor when and where you can.
The life I am living has shown me that I can survive it. Not with my hands on my hips with demands of arrogance. Instead, I am surviving down on my knees, humbled in prayer. Please Lord, see me through these days. I don't know what you have planned for me and my family but if it is your will, please bring us through it. Maybe that was the lesson meant for me all along.
Our youngest son has been in a developmental lag for longer than we have typically experienced in the past. It has all of us a bit stymied and frustrated. His occupational therapist says his focus is much improved from the past but his motivation is lacking. At school, they tell us he is very motivated to do well and actively participates but lacks focus. At home, he is exhausted and prone to tantrums because he is exhausted. At least once every couple weeks, he falls asleep soon after coming home from school and sleeps until the next morning. We can tell the day of the week based upon his frustration level and tendency for tantrums. The later in the week, the greater the likelihood a meltdown will occur.
My method of coping with stress is to utilize a dry sarcastic sense of humor. In recent months, I had a difficult time finding the humor in our son's behavior. It didn't seem to matter what I tried or how hard I worked, he didn't seem to be improving. With everything else that life has thrown at me, I just couldn't find the silver lining or the funny in the moments like I had in the past. I was frustrated. Why couldn't I help my own son? I was angry. I didn't sign up for this. Why couldn't he be like other kids his age? I was scared. What if he doesn't start to catch up with his peers? Will life always be this hard for him? For us?
I look at the person I was before our youngest son. There are things that I miss about that girl. She thought the world was hers to take. Nothing was out of reach with enough hard work and effort. Wow. What naivete, or was it optimism?
On the other hand, I look at that girl and there are things about her that sadden me. How judgmental she could be! She looked at other people's life experiences and judged them without knowing what their lives were really like. Wow. I'm so sorry for that.
That girl also thought she knew the Lord. But her understanding of the Lord was based on a girl who seemed to be standing with her hands on her hips saying "Here I am Lord. Here's what I deserve. I'm your follower. Now make it happen." Wow. What complacency and arrogance. I'm especially sorry for that.
Life with my youngest son has opened my eyes in so many ways. I discovered that it doesn't matter what life hands you. It is never going to be fair. Or easy. Or uncomplicated. That's not how life works. What does ultimately matter is how you handle it.
I may no longer be that naive or optimistic girl of my past. Indeed, I am much less likely to judge the life of those around me. Instead, I have been greatly humbled by life. It has taken my hearing. It has shown me weakness of body and spirit. It has shown me that I can't cure my son or make him better. I can't control what circumstances life brings me and my family.
I am once again beginning to see the humor in life with our youngest son. He exhausts me. He frustrates me. He also makes me laugh like crazy.
We argued over socks. An argument that involved twenty minutes of trying to rationally, calmly explain why socks must be worn; that the socks must be dry ones, not wet ones; and that they must match since I sent him to school with his sneakers on the wrong feet the day before. (I didn't want them to think I was a COMPLETE failure as a mother!) For twenty minutes, I was calm. For twenty minutes, I was patient. For twenty minutes, I was a good mother. After twenty minutes... I lost my mind and found myself hopping up and down and ranting "Put on some matching socks right this minute or I am going to lose my mind." Who can't find humor in moments of insanity like that?
When his father told him he couldn't go to the Atrium Cafe at the hospital after therapy, he lay down in the middle of the hospital, on the floor and held a civil protest. Minutes later, he jumped up and declared he was the "worstest father in the world". He then ran down the hall and disappeared out of sight. My husband found him hiding in a corner down the hospital corridor. Who can't find humor in such lunacy?
After a particularly nasty meltdown, we gave him a bath to help him calm himself down. The warm water seems to take all the frustration and aggression out of him. It almost always works. As he lay in the tub, finally calm and relaxed, his father attempted to process the tantrum with him. "Now don't you think instead of throwing a tantrum and yelling at us, you could just try talking to us?" Our son looks at him, strokes his chin in serious thought and replies "Hmm. I should try that." Who wouldn't laugh at that? Well, come to think of it, maybe not everyone. But when faced with moments like these on a regular basis, you learn to find the humor when and where you can.
The life I am living has shown me that I can survive it. Not with my hands on my hips with demands of arrogance. Instead, I am surviving down on my knees, humbled in prayer. Please Lord, see me through these days. I don't know what you have planned for me and my family but if it is your will, please bring us through it. Maybe that was the lesson meant for me all along.
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