school report
Apr 23, 2007 11:11 AM
My husband has a few weeks left of school before he graduates. He is taking a class on disabilities currently. He had to write a research paper and include someone with a disability. He wrote about Joshua and a few of his issues currently. I was really proud of my husband and the paper he wrote, so I thought I would share it with you. I hope he gets a decent grade too!!
A Day in the Life of Joshua
Paul
Disabilities in Society
21 April 2007
Joshua is a very happy and curious boy that is almost six years old. He has had a very full life of activities that most boys that are almost six have never even thought or heard of. A person would have a hard time even detecting that there is anything different at all. Follow him throughout a typical day in his life and those differences become very apparent.
Josh is usually the first one awake in his family, waking up early and going straight to the TV to put in his favorite DVD. More often than not, he forgets to put on his glasses so he has positioned himself a few inches away from the TV. Soon the rest of the family is awake and either Mom or Dad has brought his glasses to him and started his breathing medicine. Josh was born 15 weeks before his due date and so he spent over two months on a ventilator in the Neonatal Intensive Care Unit, or the NICU. Because of the prematurity and the duration of ventilator use Josh developed something called Bronchopulmonary Displasia or BPD. This disease, as he grows older, has less and less of an affect on his ability to respire. (Harrison, 66) The other side effect of the extended stay in the NICU is asthma, which, unlike BPD, he will most likely not be able to just grow out of. So, every morning he has a breathing mask put on and he breathes some medicine into his lungs for about twenty minutes, and at night he takes an oral medication, that together allow him to participate more fully in physical activities.
After the breathing medicine is done it is time for breakfast. Meals are an especially interesting and trying time for the parents of Joshua. Since Josh was a baby he has had a difficulty eating and swallowing foods and drinks of different textures and temperatures, especially if it is a food or drink that has a mixed temperature or texture like stew or a banana split. One reason that the doctors have been able to determine might be a cause for this difficulty, is that he was and still is tongue tied. The tongue is definitely a multitasker, “as well as having a speech function, the tongue is needed for sucking, chewing, swallowing, eating, drinking, tooth and gum health, kissing, sweeping the mouth for food debris and other particles (such as hairs), warming the air during mouth-breathing, and oral play (for instance, poking the tongue out and waggling it about for fun).” (Bowen)
Sometimes he surprises his parents and eats very well not letting things really bother him, but generally speaking, mealtimes are quite a struggle. Besides the texture and temperature difficulties, he seems to be very easily distracted. If one of his siblings coughs or sneezes, full attention is turned to that and the food is forgotten. His parents have tried almost everything to get him to eat: showing him how good the food is, bribing him with a treat after he eats everything, pleading with him to just have a few bites, helping him get food on his fork and putting in his mouth, putting food on his fork and forcing it in his mouth, and even threatening that if he doesn’t start eating that he might have to go to the hospital and they will feed him through a tube down his throat and a needle in his arm. In a given day he eats the bare minimum to keep going, but further steps have been taken to get him off of the doctors’ “failure to thrive” list. Josh is pretty short for his age and quite a bit under the average weight for his age, but the eating difficulty doesn’t just affect weight and height but it also affects how strong his immune system is. Josh’s Nutritionist has him drinking special high power drinks that provide plenty of protein, carbohydrates, and calories. He drinks two of those a day that supplement the meager amounts of food that he eats on his own. His parents try and practice, as often as they can, having Josh eat different flavored and textured foods to try and get him used to it.
With the morning meal out of the way, Josh gets bathed and dressed for a day of playing, reading, and therapy. Most of the activities that he participates in, whether they be playing in the house or reading books, are turned into a therapy session. He also has formal therapy sessions Monday through Friday, which include, Physical, both swimming and land therapy, Occupational therapy, and Speech therapy. The following chart shows the focus of each different type of therapy that he and his therapists use to work on his various difficulties.
PhysicalBalance, Stretching, Strengthening, Jumping, Stairs, Using both sides of his body together and alternating
OccupationalScissors, Holding pencils, Writing, Emotions, Chewing, Remembering, Tactile Sensations, Ball manipulation
SpeechLetter & Blend sounds, Tongue movement, Auditory
When Josh is out in public he doesn’t really ever notice the looks that he sometimes get or the strange questions or comments that people make. His parents do, though. Josh is rather little for his age, as was previously discussed, and he has glasses which are also a result of being born so prematurely. Right after he was born he developed stage III Retinopathy of Prematurity (ROP) with PLUS disease that reached threshold and was treated with laser therapy. ROP “is a disease of the eye that affects prematurely born babies,” and “is thought to be caused by disorganized growth of retinal blood vessels resulting in scarring and retinal detachment.” (Retinopathy) The shape of his head is also different than the average head, because he spent over three months laying down not being able to be picked up but to change his diaper and clothes.
Josh’s sister participates in gymnastics, and his parents thought it would be beneficial for him to take a class. They said that it would be okay, but they would insist that he wear a helmet. Needless to say that he is not in gymnastics right now. His sister is also in a ballet class and one day when he was with his mom watching his sister at ballet practice, another mom walked up and started making comments about how small he was and his mom said that he was born very early but that he was very smart. The other mom then said something to the effect that his brain must have grown bigger in some areas and not in others. What was the most surprising was that the other mom was asking these questions and making these comments as if Josh couldn’t hear or understand what was being said.
When he was born, he weighed 1lb 10oz, and he had a rather severe brain bleed that was the cause of the mild Cerebral Palsy (CP) that he now has (or technically speaking, GMFCS 1 Dystonic Quadriplegia with fluctuating tone). Because of the CP his muscles are tight and he walks and holds himself differently than others. Since it is rather mild CP he is learning to compensate and as he gets older he might even reach the point that the CP will be virtually unnoticeable. (Harrison, 208) And as is pointed out in the book, Children with Cerebral Palsy: A Parents Guide, the future of children with CP is brighter than ever due to the advances in technology allowing for more children to gain independence and to communicate with those around them. Also the education system is allowing for those children with CP to gain a better education by tailoring their educational needs to the individual child. (Geralis, 31-32)
The brain bleed at birth also made it necessary to have a shunt placed in his head. A shunt is a mechanism that by-passes his now plugged natural passageways that are supposed to drains the cerebral-spinal fluid from the brain and down into the body cavity. The shunt carries the fluid from the ventricles in the brain out of the skull and follows a path under the skin behind the ear, down the neck, over the ribs, and then into the abdominal cavity where it drains. The flow rate has to be controlled with a magnetically programmable valve to mimic the natural process as closely as possible. If the shunt were to malfunction there would be real danger to Josh’s wellbeing and even life, so extreme care must be taken every day to ensure that it is functioning properly. Josh has been warned not to participate in activities that might allow the shunt to break, and to stay away from magnets. They really can’t be any more specific than that because this kind of shunt that he has is relatively new and not much is known on how it reacts to different situations. The following is a portion of a list from a book on hydrocephalus that help a person know if the shunt is malfunctioning:
•Loss of appetite
•Nausea and Vomiting
•Behavioral changes
•Gait difficulties such as frequent loss of balance or mobility, stumbling, or drafting to one side or the other
•Muscle tension, particularly in the neck and shoulders
•Lethargy, defined as a sudden loss of energy, complaining all of the time of being tired, or having an extremely difficult time waking up
•A persistent low grade fever, or a high grade fever if the infection is more aggressive (Toporek, 127-128)
This list is a list of possible signs of shunt malfunction, but it is also a list of normal everyday traits of a six year old boy with mild CP, vision problems, and that gets colds and the flu. It is a very hard thing to try and differentiate what is just normal and what is shunt malfunction.
Josh also has Auditory Processing Disorder (APD), and some of its symptoms are as follows:
•Difficulty maintaining focus on an activity if other sounds are present; child is easily distracted by other sounds in the environment
•Difficulty following multi-step directions
•Need more time to process information
A sure barrier that is presented by society to someone with this APD is the fast pace that this society keeps. In his therapies they are trying to get him ready for school where when the teacher asks a question they will want an answer right away, not in five or ten seconds.
In other aspects of his life he is very smart and capable. He learned to read and do simple addition and subtraction early, and he has a very curious mind, always asking questions on how things work.
He goes to bed every night worn out from the day’s activities, and every day there are improvements, as little as they might be. For a person that does not live in the house with him they are able to see those changes more easily. There are still many obstacles for him to overcome, and many obstacles for our society to overcome, but all in all Joshua has a very bright future that will allow him mostly the same opportunities as others.
Works Cited
1.Harrison, Helen, Ann Kositsky, R.N. The Premature Baby Book: A Parents’ Guide to Coping and Caring in the First Years. New York: St. Martin’s Press, 1983.
2.Bowen, Caroline. Tongue-Tie: ANKYLOGLOSSIA or SHORT LINGUAL FRAENUM. 2000. 21 April 2007. .
3.Retinopathy of Prematurity. 19 April 2007. 21 April 2007. .
4.Geralis, Elaine, ed. Children with Cerebral Palsy: A Parents’ Guide. Bethesda: Woodbine House, Inc., 1998.
5.Toporek, Chuck, Kellie Robinson. Hydrocephalus: A Guide for Patients, Families, and Friends. Sebastopol: O’Reilly & Associates, Inc., 1999.
Well, there it is. when I pasted it into my blog the format kind of got messed up, so the chart is gone and the lists are not all even. Well, you can get an idea of what the paper was like. Thanks for reading. Have a great night.
Tiffany
A Day in the Life of Joshua
Paul
Disabilities in Society
21 April 2007
Joshua is a very happy and curious boy that is almost six years old. He has had a very full life of activities that most boys that are almost six have never even thought or heard of. A person would have a hard time even detecting that there is anything different at all. Follow him throughout a typical day in his life and those differences become very apparent.
Josh is usually the first one awake in his family, waking up early and going straight to the TV to put in his favorite DVD. More often than not, he forgets to put on his glasses so he has positioned himself a few inches away from the TV. Soon the rest of the family is awake and either Mom or Dad has brought his glasses to him and started his breathing medicine. Josh was born 15 weeks before his due date and so he spent over two months on a ventilator in the Neonatal Intensive Care Unit, or the NICU. Because of the prematurity and the duration of ventilator use Josh developed something called Bronchopulmonary Displasia or BPD. This disease, as he grows older, has less and less of an affect on his ability to respire. (Harrison, 66) The other side effect of the extended stay in the NICU is asthma, which, unlike BPD, he will most likely not be able to just grow out of. So, every morning he has a breathing mask put on and he breathes some medicine into his lungs for about twenty minutes, and at night he takes an oral medication, that together allow him to participate more fully in physical activities.
After the breathing medicine is done it is time for breakfast. Meals are an especially interesting and trying time for the parents of Joshua. Since Josh was a baby he has had a difficulty eating and swallowing foods and drinks of different textures and temperatures, especially if it is a food or drink that has a mixed temperature or texture like stew or a banana split. One reason that the doctors have been able to determine might be a cause for this difficulty, is that he was and still is tongue tied. The tongue is definitely a multitasker, “as well as having a speech function, the tongue is needed for sucking, chewing, swallowing, eating, drinking, tooth and gum health, kissing, sweeping the mouth for food debris and other particles (such as hairs), warming the air during mouth-breathing, and oral play (for instance, poking the tongue out and waggling it about for fun).” (Bowen)
Sometimes he surprises his parents and eats very well not letting things really bother him, but generally speaking, mealtimes are quite a struggle. Besides the texture and temperature difficulties, he seems to be very easily distracted. If one of his siblings coughs or sneezes, full attention is turned to that and the food is forgotten. His parents have tried almost everything to get him to eat: showing him how good the food is, bribing him with a treat after he eats everything, pleading with him to just have a few bites, helping him get food on his fork and putting in his mouth, putting food on his fork and forcing it in his mouth, and even threatening that if he doesn’t start eating that he might have to go to the hospital and they will feed him through a tube down his throat and a needle in his arm. In a given day he eats the bare minimum to keep going, but further steps have been taken to get him off of the doctors’ “failure to thrive” list. Josh is pretty short for his age and quite a bit under the average weight for his age, but the eating difficulty doesn’t just affect weight and height but it also affects how strong his immune system is. Josh’s Nutritionist has him drinking special high power drinks that provide plenty of protein, carbohydrates, and calories. He drinks two of those a day that supplement the meager amounts of food that he eats on his own. His parents try and practice, as often as they can, having Josh eat different flavored and textured foods to try and get him used to it.
With the morning meal out of the way, Josh gets bathed and dressed for a day of playing, reading, and therapy. Most of the activities that he participates in, whether they be playing in the house or reading books, are turned into a therapy session. He also has formal therapy sessions Monday through Friday, which include, Physical, both swimming and land therapy, Occupational therapy, and Speech therapy. The following chart shows the focus of each different type of therapy that he and his therapists use to work on his various difficulties.
PhysicalBalance, Stretching, Strengthening, Jumping, Stairs, Using both sides of his body together and alternating
OccupationalScissors, Holding pencils, Writing, Emotions, Chewing, Remembering, Tactile Sensations, Ball manipulation
SpeechLetter & Blend sounds, Tongue movement, Auditory
When Josh is out in public he doesn’t really ever notice the looks that he sometimes get or the strange questions or comments that people make. His parents do, though. Josh is rather little for his age, as was previously discussed, and he has glasses which are also a result of being born so prematurely. Right after he was born he developed stage III Retinopathy of Prematurity (ROP) with PLUS disease that reached threshold and was treated with laser therapy. ROP “is a disease of the eye that affects prematurely born babies,” and “is thought to be caused by disorganized growth of retinal blood vessels resulting in scarring and retinal detachment.” (Retinopathy) The shape of his head is also different than the average head, because he spent over three months laying down not being able to be picked up but to change his diaper and clothes.
Josh’s sister participates in gymnastics, and his parents thought it would be beneficial for him to take a class. They said that it would be okay, but they would insist that he wear a helmet. Needless to say that he is not in gymnastics right now. His sister is also in a ballet class and one day when he was with his mom watching his sister at ballet practice, another mom walked up and started making comments about how small he was and his mom said that he was born very early but that he was very smart. The other mom then said something to the effect that his brain must have grown bigger in some areas and not in others. What was the most surprising was that the other mom was asking these questions and making these comments as if Josh couldn’t hear or understand what was being said.
When he was born, he weighed 1lb 10oz, and he had a rather severe brain bleed that was the cause of the mild Cerebral Palsy (CP) that he now has (or technically speaking, GMFCS 1 Dystonic Quadriplegia with fluctuating tone). Because of the CP his muscles are tight and he walks and holds himself differently than others. Since it is rather mild CP he is learning to compensate and as he gets older he might even reach the point that the CP will be virtually unnoticeable. (Harrison, 208) And as is pointed out in the book, Children with Cerebral Palsy: A Parents Guide, the future of children with CP is brighter than ever due to the advances in technology allowing for more children to gain independence and to communicate with those around them. Also the education system is allowing for those children with CP to gain a better education by tailoring their educational needs to the individual child. (Geralis, 31-32)
The brain bleed at birth also made it necessary to have a shunt placed in his head. A shunt is a mechanism that by-passes his now plugged natural passageways that are supposed to drains the cerebral-spinal fluid from the brain and down into the body cavity. The shunt carries the fluid from the ventricles in the brain out of the skull and follows a path under the skin behind the ear, down the neck, over the ribs, and then into the abdominal cavity where it drains. The flow rate has to be controlled with a magnetically programmable valve to mimic the natural process as closely as possible. If the shunt were to malfunction there would be real danger to Josh’s wellbeing and even life, so extreme care must be taken every day to ensure that it is functioning properly. Josh has been warned not to participate in activities that might allow the shunt to break, and to stay away from magnets. They really can’t be any more specific than that because this kind of shunt that he has is relatively new and not much is known on how it reacts to different situations. The following is a portion of a list from a book on hydrocephalus that help a person know if the shunt is malfunctioning:
•Loss of appetite
•Nausea and Vomiting
•Behavioral changes
•Gait difficulties such as frequent loss of balance or mobility, stumbling, or drafting to one side or the other
•Muscle tension, particularly in the neck and shoulders
•Lethargy, defined as a sudden loss of energy, complaining all of the time of being tired, or having an extremely difficult time waking up
•A persistent low grade fever, or a high grade fever if the infection is more aggressive (Toporek, 127-128)
This list is a list of possible signs of shunt malfunction, but it is also a list of normal everyday traits of a six year old boy with mild CP, vision problems, and that gets colds and the flu. It is a very hard thing to try and differentiate what is just normal and what is shunt malfunction.
Josh also has Auditory Processing Disorder (APD), and some of its symptoms are as follows:
•Difficulty maintaining focus on an activity if other sounds are present; child is easily distracted by other sounds in the environment
•Difficulty following multi-step directions
•Need more time to process information
A sure barrier that is presented by society to someone with this APD is the fast pace that this society keeps. In his therapies they are trying to get him ready for school where when the teacher asks a question they will want an answer right away, not in five or ten seconds.
In other aspects of his life he is very smart and capable. He learned to read and do simple addition and subtraction early, and he has a very curious mind, always asking questions on how things work.
He goes to bed every night worn out from the day’s activities, and every day there are improvements, as little as they might be. For a person that does not live in the house with him they are able to see those changes more easily. There are still many obstacles for him to overcome, and many obstacles for our society to overcome, but all in all Joshua has a very bright future that will allow him mostly the same opportunities as others.
Works Cited
1.Harrison, Helen, Ann Kositsky, R.N. The Premature Baby Book: A Parents’ Guide to Coping and Caring in the First Years. New York: St. Martin’s Press, 1983.
2.Bowen, Caroline. Tongue-Tie: ANKYLOGLOSSIA or SHORT LINGUAL FRAENUM. 2000. 21 April 2007. .
3.Retinopathy of Prematurity. 19 April 2007. 21 April 2007. .
4.Geralis, Elaine, ed. Children with Cerebral Palsy: A Parents’ Guide. Bethesda: Woodbine House, Inc., 1998.
5.Toporek, Chuck, Kellie Robinson. Hydrocephalus: A Guide for Patients, Families, and Friends. Sebastopol: O’Reilly & Associates, Inc., 1999.
Well, there it is. when I pasted it into my blog the format kind of got messed up, so the chart is gone and the lists are not all even. Well, you can get an idea of what the paper was like. Thanks for reading. Have a great night.
Tiffany
COMMENTS
- Apr 23, 2007 5:03 PMWow` that is amazing! What a great thing to do! Your husband did a great job....he better get a good grade. Thank you so much for sharing this..it's a great way to also get to know your family.I really enjoyed reading this.Take CareKate
- Apr 23, 2007 5:15 PMYour husband did such a great job!!!!!! That was amazing!!!Tabby
- Apr 23, 2007 7:29 PMYou should be so proud! What a wonderful paper and testament to a daddy and his little boy!
- Apr 24, 2007 2:39 AMYour husband did a great job on the paper.I hope he gets a good grade, it is well deserved!! :)Colleen
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