Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 I have never told you about my son. He's my only child, the love of my life and he is floundering in his life dealing with his medical and social history. I have a small family - just my mom and my aunt and my son. This is one of the things that can really upset me like I am tonight. I called him today and talked an hour or so. I called his dad as well. Let me start with the first though so it will make sense. I have a genetic bleeding disorder that in the pre-AIDS days was treated with a portion of whole blood. The clotting factors are in the plasma, but when they separate the plasma from the cells, a few red cells get by. I am Rh negative. I got enough Rh positive red cells that I formed antibodies against the Rh protein. When I got pregnant with an Rh positive baby, my body immediately started breaking down his blood, making him dangerously anemic. I had 32 ultrasounds, 14 amniocenteses, and 2 intrauterine transfusions to keep him healthy. Labor was induced at 35 weeks (5 weeks early) so that he could be transfused in the high risk nursery instead of doing a more dangerous intrauterine transfusion. He suffered a few long-term problems related to prematurity. He had low muscle tone and could not nurse effectively. He also could not tolerate milk OR soy based formulas. We ended up having to make a horrid concoction of roast chicken or beef ground up, apple juice and a calcium supplement. He ate it through a nipple with a big hole cut in it. He had to have physical therapy and occupational therapy until he was 2. I worked full time, did all of this, and he was in the MD's office about every other week. It was exhausting both for me and his dad. When was 4 he started kindergarten and loved it. His IQ was 155 and he was extremely bright and outgoing. He could read before starting school. During Christmas break in his first grade year, a very troubled child hit in the head with a skateboard. He had a goose-egg on his forehead, but that and a headache was all that appeared to be wrong. After the break, nothing was the same. He couldn't read a complete sentence without stopping. It turned out that he was having 40-60 petit mal seizures/hr. It took a couple of years to get him controlled with medicine. They take kids off of seizure medicine when they hit puberty or turn 13. He was med-free for 4 years until his senior year of high school. He then had a grand mal seizure on the bus on morning. He has continued to have seizures intermittently to the present day. He had been diagnosed with ADHD and was started on Ritalin for that. He was really oppositional when it came to taking medicine. To this day he doesn't always do it. He has never been able to ride a bike or get his driver's license because of seizures. He went from being a straight A student to being a D-F student. He has a great imagination and many good abilities. He just can't handle an academic situation. As I write this, he has just finished his 7th semester at the community college. He has only taken 2 classes/semester and has sometimes dropped one of those. Attendence is a problem. He has lots of migraines and GI problems. He has almost continual sinus problems that he refuses to treat with OTC remedies so he ends up on antibiotics. I love my child with all my heart. It is so upsetting to me when he won't do what he needs to do to take his meds (use a pill container so you see if you miss a dose). He stays home with the slightest discomfort and misses too much school. He only showers 1-2 times a month. He only combs his hair when he showers. Heaven knows when he brushes his teeth. He's never held a job. This year was the first time he's put in any applications. Since he can't drive, getting to work would be a real problem. In the end, my -ex is paying him out of his pocket to do some computer work for him at his job. I do not see how my child is going to function in life. He does not straighten things up and keep them organized so he can find them again. His hygeine is not good. He's 21. I need him to be an adult and live his own life. He needs to be on his own. When I first got so sick I couldn't work, my husband did not believe I was sick. He taught that I was not sick and neither did much to help me. When I got my disability, I swear my husband was jealous that I got a check for sitting home doing 'nothing.' He started saying that he was disabled too (and thus could do nothing to help me). He said it often enough and did have some cardiac problems. He is not on disability, but he has pretty serious heart problems. They just implanted a difibrillator in his chest. He is now working full time like I did for years when he is so sick he needs to cut back to part time. He was 12.5 years older than me so he is facing retirement in 18 months. now looks at my disability with the same envy that my -ex used to. He figures he has 2 sick parents and he's had health problems since he was 5 so disability seems inevitable to him. One day my husband will throw him out. I can't say I blame him because financially and health-wise he's at the end of his rope trying to deal with a child who won't do any of the things he needs to be doing at this stage of his life. I talk to by phone almost daily and he visits me for 3-4 weeks a year. I am always trying to troubleshoot things with him to find solutions that he is comfortable with and might do. His situation is one of the few things that gets me nervous and agitated like I am tonight. My stomach is in knots and a headache is lurking. I could cry easily. I can take extra meds or try to deal with it in non-medicine ways (my choice). I need input from you on the situation. Thank you. ; ) Willow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 Willow~ Hi Hon *hugs* .... My son is 14, he has learning difficulites and they believe he has aspergers syndrome. I can only read your post and feel anxious for you, as parents of special needs kids, (let alone being ill parents) , the one hope and goal we have for them is that one day they will be able to be productive members of society. My hopes are with your son and your family.. I know u will do everything u possibly can for your son, within reason. I am just now heading , head long into trying to get my son prepared for adulthood and it scares me every day... I am always here if u want to talk... Kerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 Sounds like your son is going to be in for a rude awakening. Sometimes thats the only way kids will learn. But try printing up a copy of your post. Tell him to read it, and make sure he knows that you are the one who wrote it. Sue For a fun time try http://www.peternoone.com. For The DC5 fans, please check the updates on Mike at http://www.mikesmith1964.com About Willow's Son I have never told you about my son. He's my onlychild, the love of my life and he is floundering inhis life dealing with his medical and social history.I have a small family - just my mom and my aunt and myson. This is one of the things that can really upsetme like I am tonight. I called him today and talked anhour or so. I called his dad as well. Let me startwith the first though so it will make sense.I have a genetic bleeding disorder that in thepre-AIDS days was treated with a portion of wholeblood. The clotting factors are in the plasma, butwhen they separate the plasma from the cells, a fewred cells get by. I am Rh negative. I got enough Rhpositive red cells that I formed antibodies againstthe Rh protein. When I got pregnant with an Rhpositive baby, my body immediately started breakingdown his blood, making him dangerously anemic. I had32 ultrasounds, 14 amniocenteses, and 2 intrauterinetransfusions to keep him healthy. Labor was induced at35 weeks (5 weeks early) so that he could betransfused in the high risk nursery instead of doing amore dangerous intrauterine transfusion. He suffered afew long-term problems related to prematurity. He hadlow muscle tone and could not nurse effectively. Healso could not tolerate milk OR soy based formulas. Weended up having to make a horrid concoction of roastchicken or beef ground up, apple juice and a calciumsupplement. He ate it through a nipple with a big holecut in it. He had to have physical therapy andoccupational therapy until he was 2. I worked fulltime, did all of this, and he was in the MD's officeabout every other week. It was exhausting both for meand his dad.When was 4 he started kindergarten and lovedit. His IQ was 155 and he was extremely bright andoutgoing. He could read before starting school. DuringChristmas break in his first grade year, a verytroubled child hit in the head with askateboard. He had a goose-egg on his forehead, butthat and a headache was all that appeared to be wrong.After the break, nothing was the same. He couldn'tread a complete sentence without stopping. It turnedout that he was having 40-60 petit mal seizures/hr. Ittook a couple of years to get him controlled withmedicine. They take kids off of seizure medicine whenthey hit puberty or turn 13. He was med-free for 4years until his senior year of high school. He thenhad a grand mal seizure on the bus on morning. He hascontinued to have seizures intermittently to thepresent day. He had been diagnosed with ADHD and wasstarted on Ritalin for that. He was reallyoppositional when it came to taking medicine. To thisday he doesn't always do it. He has never been able toride a bike or get his driver's license because ofseizures. He went from being a straight A student tobeing a D-F student. He has a great imagination andmany good abilities. He just can't handle an academicsituation.As I write this, he has just finished his 7th semesterat the community college. He has only taken 2classes/semester and has sometimes dropped one ofthose. Attendence is a problem. He has lots ofmigraines and GI problems. He has almost continualsinus problems that he refuses to treat with OTCremedies so he ends up on antibiotics.I love my child with all my heart. It is so upsettingto me when he won't do what he needs to do to take hismeds (use a pill container so you see if you miss adose). He stays home with the slightest discomfort andmisses too much school. He only showers 1-2 times amonth. He only combs his hair when he showers. Heavenknows when he brushes his teeth. He's never held ajob. This year was the first time he's put in anyapplications. Since he can't drive, getting to workwould be a real problem. In the end, my -ex is payinghim out of his pocket to do some computer work for himat his job.I do not see how my child is going to function inlife. He does not straighten things up and keep themorganized so he can find them again. His hygeine isnot good. He's 21. I need him to be an adult and livehis own life. He needs to be on his own. When I first got so sick I couldn't work, my husbanddid not believe I was sick. He taught that Iwas not sick and neither did much to help me. When Igot my disability, I swear my husband was jealous thatI got a check for sitting home doing 'nothing.' Hestarted saying that he was disabled too (and thuscould do nothing to help me). He said it often enoughand did have some cardiac problems. He is not ondisability, but he has pretty serious heart problems.They just implanted a difibrillator in his chest. Heis now working full time like I did for years when heis so sick he needs to cut back to part time. He was12.5 years older than me so he is facing retirement in18 months. now looks at my disability with thesame envy that my -ex used to. He figures he has 2sick parents and he's had health problems since he was5 so disability seems inevitable to him.One day my husband will throw him out. I can't say Iblame him because financially and health-wise he's atthe end of his rope trying to deal with a child whowon't do any of the things he needs to be doing atthis stage of his life. I talk to by phonealmost daily and he visits me for 3-4 weeks a year. Iam always trying to troubleshoot things with him tofind solutions that he is comfortable with and mightdo. His situation is one of the few things that getsme nervous and agitated like I am tonight. My stomachis in knots and a headache is lurking. I could cryeasily. I can take extra meds or try to deal with itin non-medicine ways (my choice).I need input from you on the situation. Thank you.; )Willow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2007 Report Share Posted June 9, 2007 Willow,You don't say how old your son is, but from all you've said, it doesn't sound to me as though your son is intentionally not taking care of himself. It sounds like the brain injury he received from being hit on the head and from all the subsequent seizures has seriously affected his short-term memory and his executive function processes. Taken from Wikipedia: [Executive function] is thought to be involved in processes such as planning, cognitive flexibility, abstract thinking, rule acquisition, initiating appropriate actions and inhibiting inappropriate actions, and selecting relevant sensory information.For people with these issues, something as seemingly simple as taking a shower can be a monumental task; one that is both mentally and physically exhausting. Think of all the things that have to be in place to take a shower. You have to: 1. REMEMBER to take a shower (my short-term memory is so bad that if the phone rings while I'm getting ready to take a shower, by the time I'm off the phone, I'll have forgotten that I needed to shower). 2. Make sure you have at least one clean towel and wash cloth3. Make sure aforementioned towel and wash cloth make it into the bathroom.4. Make sure aforementioned wash cloth makes it into the shower. 5. Make sure aforementioned towel is within reach of the shower so you don't have to get out of the shower dripping wet in order to get the towel.6. Make sure you have enough body soap and shampoo. 7. Remember to wet the wash cloth8. Remember to put soap on the wet wash cloth.9. Remember to use soapy wash cloth on *all parts* of self.10. Remember to rinse soap off self.11. Remember to rinse soap out of wash cloth 12. Remember to wet hair before applying shampoo.13. Remember to apply shampoo.14. Remember to rinse shampoo out of hair.Now imagine this: You wake up in the morning knowing you have to do " x " at " x time, " and you have to shower before you leave the house. You go to get in the shower only to realize there are no towels, wash clothes, soap or shampoo in the bathroom. You find a towel, only, by the time you've found one, you've forgotten that you also had to get a wash cloth, soap and shampoo. You get into the shower and start the water, only to realize you still don't have a wash cloth, soap, or shampoo. So you get out of the shower, and dry off. While drying off, you start thinking that " DOH! I never even got soaped up! " Having completely forgotten that you got out of the shower because you didn't *have* soap to soap up with, you get back in the shower to soap up. Only once you've restarted the water and are ready to soap up do you realize why you got out of the shower in the first place - to get soap! You get the idea. Now imagine that this happens with *every* item you were supposed to bring into the bathroom/shower with you. Then, by the time you have actually gathered all the things you needed for your shower, you've turned the water on and off so many times that you are now OUT OF HOT WATER! I'm telling you all of this because I have Been There/Done That - more than a few times! I, too, have gone up to three weeks without a shower. Not out of a lack of caring about how I look, but out of the feeling of pure exhaustion I get just *thinking* about all the things I have to remember to do/get just to be ready to *get in* the shower. Then there is the frustration you feel at yourself when you get out of the shower only to realize you still have soap on your body and/or shampoo in your hair. Yep, been there, done that, too! Why would anyone *willingly* subject themselves to that kind of frustration and physical and mental exhaustion (it does get physically exhausting running around trying to find everything you need some days) any more than they *absolutely had to*? Your son probably only showers once a month because that's as often as he can stand to go through the mental and physical exhaustion. He probably doesn't realize how bad it is for his body and his health to only shower once a month. I didn't for a long time. My theory was " I don't see any dirt. Showering can wait. " Only once I realized that even if I *looked* clean, not showering after incontinence accidents can cause *major* infections, that I started to shower more often. Even now, if I haven't had any smelly bladder or bowel issues, I may only remember to shower once a week. As for brushing his teeth, again, it's a multi-step process. Also, does he gag easily? Does he seem to be overly sensitive to sensory input (sight, sound, touch, smell, taste)? If so, he may have Sensory Integration Disorder. For someone with Sensory Integration Disorder, brushing one's teeth can be torture because you have to deal with trying to brush your teeth without triggering your gag reflex and at the same time be able to tolerate the sight, smell and taste of the toothpaste. It's another one of those " Why subject myself to it any more than absolutely necessary? " Oh, and for someone with Sensory Integration Disorder, going to the dentist can be like entering one of levels of Hell Dante describes in " The Inferno, " so we tend to avoid that as much as absolutely possible as well. My advice to you would be to sit down with your son and first, tell him you are worried about his health because showering only once a month isn't good for your body since it allows bacteria to grow; even if you can't see it, it's there. Second, help him make a list of all the things he needs to remember to do in order to successfully complete certain tasks. I have my whole morning routine mapped out; including all the things I need to make sure I have for my shower. If a list with words doesn't help, help him find pictures that he can copy or print or cut out to use as visual reminders. My routine is mapped out as a series of pictures I found in one of my computer programs. I printed the pictures, got them laminated, and put Velcro on the back of each picture. Then I took part of a manila folder, laminated it, and put the other side of the Velcro on the folder. At night, I make sure all the pictures are attached to the manila folder. In the morning, as I complete the task represented by a picture, I take the picture down and put it in an envelope. This allows me to *see* what I still need to do to get ready for the day. Willow, I'm sorry this email got so long, but your son sounds so much like me, I had to respond. The medical profession is just now starting to understand how even minor traumatic injury to certain parts of the brain can affect someone's ability to function in their day-to-day lives, even if IQ isn't directly affected. Unfortunately, even though the medical profession has finally started to acknowledge the scope of the problems caused by Traumatic Brain Injury, it's still difficult to find doctors and therapists who are knowledgeable about how to address these problems in adults. Since the brains of children are so much more resilient and easier to " retrain, " most current research into treatment focuses on children and is done by those in the pediatric field. That leaves the task of adjusting to life as an *adult* with Traumatic Brain Injury up to those of us *with* Traumatic Brain Injury, and those that love us. On 6/8/07, Willow <writewillow@...> wrote: Dear Kerry,Thank you so much for your wisdom in looking at mysituation and your understanding. I may take you up onwriting you sometime and you are free to write me ifyou need to as well.((( hugs ))) Willow-- Tracey White " No day but today. " Born 1/2/1976 with Spina Bifida, Hydrocephalus and Arnold-Chiari Malformation Type IINonverbal Learning Disability, osteopenia, hypothyroidism, osteoarthritis, Sensory Integration Disorder, neurogenic bowel/bladder, possible Autism Spectrum Disorder, no depth-perception or peripheral vision, severe latex allergy Meds: Synthroid, Vitamin C, Vitamin D, Calcium, Macrobid, Nasonex, Tramadol/Vicodin as needed for pain Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2007 Report Share Posted June 9, 2007 I have to do the step by step process with my son on some things now, And he has actually started picking things up a little easier. There are still times he forgets his bath towel but he does remember to take a shower first thing in the morning... I sound like a tape recorder... Did u put on Deodarant? Did u hang up your towel? DId you make sure there wasn't water on the floor... Ect. Hell to be honest sometimes I have to do the same thing with me... Kerry -- Re: About Willow's Son Willow,You don't say how old your son is, but from all you've said, it doesn't sound to me as though your son is intentionally not taking care of himself. It sounds like the brain injury he received from being hit on the head and from all the subsequent seizures has seriously affected his short-term memory and his executive function processes. Taken from Wikipedia: [Executive function] is thought to be involved in processes such as planning, cognitive flexibility, abstract thinking, rule acquisition, initiating appropriate actions and inhibiting inappropriate actions, and selecting relevant sensory information.For people with these issues, something as seemingly simple as taking a shower can be a monumental task; one that is both mentally and physically exhausting. Think of all the things that have to be in place to take a shower. You have to: 1. REMEMBER to take a shower (my short-term memory is so bad that if the phone rings while I'm getting ready to take a shower, by the time I'm off the phone, I'll have forgotten that I needed to shower). 2. Make sure you have at least one clean towel and wash cloth3. Make sure aforementioned towel and wash cloth make it into the bathroom.4. Make sure aforementioned wash cloth makes it into the shower. 5. Make sure aforementioned towel is within reach of the shower so you don't have to get out of the shower dripping wet in order to get the towel.6. Make sure you have enough body soap and shampoo.7. Remember to wet the wash cloth8. Remember to put soap on the wet wash cloth.9. Remember to use soapy wash cloth on *all parts* of self.10. Remember to rinse soap off self.11. Remember to rinse soap out of wash cloth 12. Remember to wet hair before applying shampoo.13. Remember to apply shampoo.14. Remember to rinse shampoo out of hair.Now imagine this: You wake up in the morning knowing you have to do "x" at "x time," and you have to shower before you leave the house. You go to get in the shower only to realize there are no towels, wash clothes, soap or shampoo in the bathroom. You find a towel, only, by the time you've found one, you've forgotten that you also had to get a wash cloth, soap and shampoo. You get into the shower and start the water, only to realize you still don't have a wash cloth, soap, or shampoo. So you get out of the shower, and dry off. While drying off, you start thinking that "DOH! I never even got soaped up!" Having completely forgotten that you got out of the shower because you didn't *have* soap to soap up with, you get back in the shower to soap up. Only once you've restarted the water and are ready to soap up d you realize why you got out of the shower in the first place - to get soap! You get the idea. Now imagine that this happens with *every* item you were supposed to bring into the bathroom/shower with you. Then, by the time you have actually gathered all the things you needed for your shower, you've turned the water on and off so many times that you are now OUT OF HOT WATER! I'm telling you all of this because I have Been There/Done That - more than a few times! I, too, have gone up to three weeks without a shower. Not out of a lack of caring about how I look, but out of the feeling of pure exhaustion I get just *thinking* about all the things I have to remember to do/get just to be ready to *get in* the shower. Then there is the frustration you feel at yourself when you get out of the shower only to realize you still have soap on your body and/or shampoo in your hair. Yep, been there, done that, too! Why would anyone *willingly* subject themselves to that kind of frustration and physical and mental exhaustion (it does get physically exhausting running around trying to find everything you need some days) any more than they *absolutely had to*? Your son probably only showers once a month because that's as often as he can stand to go through the mental and physical exhaustion. He probably doesn't realize how bad it is for his body and his health to only shower once a month. I didn't for a long time. My theory was "I don't see any dirt. Showering can wait." Only once I realized that even if I *looked* clean, not showering after incontinence accidents can cause *major* infections, that I started to shower more often. Even now, if I haven't had any smelly bladder or bowel issues, I may only remember to shower once a week. As for brushing his teeth, again, it's a multi-step process. Also, does he gag easily? Does he seem to be overly sensitive to sensory input (sight, sound, touch, smell, taste)? If so, he may have Sensory Integration Disorder. For someone with Sensory Integration Disorder, brushing one's teeth can be torture because you have to deal with trying to brush your teeth without triggering your gag reflex and at the same time be able to tolerate the sight, smell and taste of the toothpaste. It's another one of those "Why subject myself to it any more than absolutely necessary?" Oh, and for someone with Sensory Integration Disorder, going to the dentist can be like entering one of levels of Hell Dante describes in "The Inferno," so we tend to avoid that as much as absolutely possible as well. My advice to you would be to sit down with your son and first, tell him you are worried about his health because showering only once a month isn't good for your body since it allows bacteria to grow; even if you can't see it, it's there. Second, help him make a list of all the things he needs to remember to do in order to successfully complete certain tasks. I have my whole morning routine mapped out; including all the things I need to make sure I have for my shower. If a list with words doesn't help, help him find pictures that he can copy or print or cut out to use as visual reminders. My routine is mapped out as a series of pictures I found in one of my computer programs. I printed the pictures, got them laminated, and put Velcro on the back of each picture. Then I took part of a manila folder, laminated it, and put the other side of the Velcro on the folder. At night, I make sure all the pictures are attached to the manila folder. In the morning, as I complete the task represented by a picture, I take the picture down and put it in an envelope. This allows me to *see* what I still need to do to get ready for the day. Willow, I'm sorry this email got so long, but your son sounds so much like me, I had to respond. The medical profession is just now starting to understand how even minor traumatic injury to certain parts of the brain can affect someone's ability to function in their day-to-day lives, even if IQ isn't directly affected. Unfortunately, even though the medical profession has finally started to acknowledge the scope of the problems caused by Traumatic Brain Injury, it's still difficult to find doctors and therapists who are knowledgeable about how to address these problems in adults. Since the brains of children are so much more resilient and easier to "retrain," most current research into treatment focuses on children and is done by those in the pediatric field. That leaves the task of adjusting to life as an *adult* with Traumatic Brain Injury up to those of us *with* Traumatic Brain Injury, and those that love us. On 6/8/07, Willow <writewillow > wrote: Dear Kerry,Thank you so much for your wisdom in looking at mysituation and your understanding. I may take you up onwriting you sometime and you are free to write me ifyou need to as well.((( hugs ))) Willow-- Tracey White"No day but today."Born 1/2/1976 with Spina Bifida, Hydrocephalus and Arnold-Chiari Malformation Type IINonverbal Learning Disability, osteopenia, hypothyroidism, osteoarthritis, Sensory Integration Disorder, neurogenic bowel/bladder, possible Autism Spectrum Disorder, no depth-perception or peripheral vision, severe latex allergy Meds: Synthroid, Vitamin C, Vitamin D, Calcium, Macrobid, Nasonex, Tramadol/Vicodin as needed for pain Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2007 Report Share Posted June 9, 2007 Dear Kerry, Thank you so much for sharing your experiences. I don't feel alone now and I have hope that CAN find a way to do these routine things. ; ) Willow --- ~Kerry~ <kerry-lane@...> wrote: > I have to do the step by step process with my son on > some things now, > And he has actually started picking things up a > little easier. There are > still times he forgets his bath towel but he does > remember to take a shower > first thing in the morning... I sound like a tape > recorder... Did u put on > Deodarant? Did u hang up your towel? DId you make > sure there wasn't water on > the floor... Ect. Hell to be honest sometimes I > have to do the same thing > with me... > > Kerry > > -- Re: About Willow's Son > > Willow, > > You don't say how old your son is, but from all > you've said, it doesn't > sound to me as though your son is intentionally not > taking care of himself. > It sounds like the brain injury he received from > being hit on the head and > from all the subsequent seizures has seriously > affected his short-term > memory and his executive function processes. Taken > from Wikipedia: > [Executive function] is thought to be involved in > processes such as planning > cognitive flexibility, abstract thinking, rule > acquisition, initiating > appropriate actions and inhibiting inappropriate > actions, and selecting > relevant sensory information. > > For people with these issues, something as seemingly > simple as taking a > shower can be a monumental task; one that is both > mentally and physically > exhausting. Think of all the things that have to be > in place to take a > shower. You have to: > > 1. REMEMBER to take a shower (my short-term memory > is so bad that if the > phone rings while I'm getting ready to take a > shower, by the time I'm off > the phone, I'll have forgotten that I needed to > shower). > > 2. Make sure you have at least one clean towel and > wash cloth > > 3. Make sure aforementioned towel and wash cloth > make it into the bathroom. > > 4. Make sure aforementioned wash cloth makes it into > the shower. > > 5. Make sure aforementioned towel is within reach of > the shower so you don't > have to get out of the shower dripping wet in order > to get the towel. > > 6. Make sure you have enough body soap and shampoo. > > 7. Remember to wet the wash cloth > > 8. Remember to put soap on the wet wash cloth. > > 9. Remember to use soapy wash cloth on *all parts* > of self. > > 10. Remember to rinse soap off self. > > 11. Remember to rinse soap out of wash cloth > > 12. Remember to wet hair before applying shampoo. > > 13. Remember to apply shampoo. > > 14. Remember to rinse shampoo out of hair. > > Now imagine this: You wake up in the morning knowing > you have to do " x " at > x time, " and you have to shower before you leave the > house. You go to get in > the shower only to realize there are no towels, wash > clothes, soap or > shampoo in the bathroom. You find a towel, only, by > the time you've found > one, you've forgotten that you also had to get a > wash cloth, soap and > shampoo. You get into the shower and start the > water, only to realize you > still don't have a wash cloth, soap, or shampoo. So > you get out of the > shower, and dry off. While drying off, you start > thinking that " DOH! I never > even got soaped up! " Having completely forgotten > that you got out of the > shower because you didn't *have* soap to soap up > with, you get back in the > shower to soap up. Only once you've restarted the > water and are ready to > soap up d you realize why you got out of the shower > in the first place - to > get soap! > > You get the idea. Now imagine that this happens with > *every* item you were > supposed to bring into the bathroom/shower with you. > Then, by the time you > have actually gathered all the things you needed for > your shower, you've > turned the water on and off so many times that you > are now OUT OF HOT WATER! > > > I'm telling you all of this because I have Been > There/Done That - more than > a few times! I, too, have gone up to three weeks > without a shower. Not out > of a lack of caring about how I look, but out of the > feeling of pure > exhaustion I get just *thinking* about all the > things I have to remember to > do/get just to be ready to *get in* the shower. Then > there is the > frustration you feel at yourself when you get out of > the shower only to > realize you still have soap on your body and/or > shampoo in your hair. Yep, > been there, done that, too! Why would anyone > *willingly* subject themselves > to that kind of frustration and physical and mental > exhaustion (it does get > physically exhausting running around trying to find > everything you need some > days) any more than they *absolutely had to*? > > Your son probably only showers once a month because > that's as often as he > can stand to go through the mental and physical > exhaustion. He probably > doesn't realize how bad it is for his body and his > health to only shower > once a month. I didn't for a long time. My theory > was " I don't see any dirt. > Showering can wait. " Only once I realized that even > if I *looked* clean, not > showering after incontinence accidents can cause > *major* infections, that I > started to shower more often. Even now, if I haven't > had any smelly bladder > or bowel issues, I may only remember to shower once > a week. > > As for brushing his teeth, again, it's a multi-step > process. Also, does he > gag easily? Does he seem to be overly sensitive to > sensory input (sight, > sound, touch, smell, taste)? If so, he may have > Sensory Integration Disorder > For someone with Sensory Integration Disorder, > brushing one's teeth can be > torture because you have to deal with trying to > brush your teeth without > triggering your gag reflex and at the same time be > able to tolerate the > sight, smell and taste of the toothpaste. It's > another one of those " Why > subject myself to it any more than absolutely > necessary? " Oh, and for > someone with Sensory Integration Disorder, going to > the dentist can be like > entering one of levels of Hell Dante describes in > " The Inferno, " so we tend > to avoid that as much as absolutely possible as > well. > > My advice to you would be to sit down with your son > and first, tell him you > are worried about his health because showering only > once a month isn't good > for your body since it allows bacteria to grow; even > if you can't see it, it > s there. Second, help him make a list of all the > things he needs to remember > to do in order to successfully complete certain > tasks. I have my whole > morning routine mapped out; including all the things > I need to make sure I > === message truncated === Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2007 Report Share Posted June 9, 2007 Dear Kerry, Thank you so much for sharing your experiences. I don't feel alone now and I have hope that CAN find a way to do these routine things. ; ) Willow --- ~Kerry~ <kerry-lane@...> wrote: > I have to do the step by step process with my son on > some things now, > And he has actually started picking things up a > little easier. There are > still times he forgets his bath towel but he does > remember to take a shower > first thing in the morning... I sound like a tape > recorder... Did u put on > Deodarant? Did u hang up your towel? DId you make > sure there wasn't water on > the floor... Ect. Hell to be honest sometimes I > have to do the same thing > with me... > > Kerry > > -- Re: About Willow's Son > > Willow, > > You don't say how old your son is, but from all > you've said, it doesn't > sound to me as though your son is intentionally not > taking care of himself. > It sounds like the brain injury he received from > being hit on the head and > from all the subsequent seizures has seriously > affected his short-term > memory and his executive function processes. Taken > from Wikipedia: > [Executive function] is thought to be involved in > processes such as planning > cognitive flexibility, abstract thinking, rule > acquisition, initiating > appropriate actions and inhibiting inappropriate > actions, and selecting > relevant sensory information. > > For people with these issues, something as seemingly > simple as taking a > shower can be a monumental task; one that is both > mentally and physically > exhausting. Think of all the things that have to be > in place to take a > shower. You have to: > > 1. REMEMBER to take a shower (my short-term memory > is so bad that if the > phone rings while I'm getting ready to take a > shower, by the time I'm off > the phone, I'll have forgotten that I needed to > shower). > > 2. Make sure you have at least one clean towel and > wash cloth > > 3. Make sure aforementioned towel and wash cloth > make it into the bathroom. > > 4. Make sure aforementioned wash cloth makes it into > the shower. > > 5. Make sure aforementioned towel is within reach of > the shower so you don't > have to get out of the shower dripping wet in order > to get the towel. > > 6. Make sure you have enough body soap and shampoo. > > 7. Remember to wet the wash cloth > > 8. Remember to put soap on the wet wash cloth. > > 9. Remember to use soapy wash cloth on *all parts* > of self. > > 10. Remember to rinse soap off self. > > 11. Remember to rinse soap out of wash cloth > > 12. Remember to wet hair before applying shampoo. > > 13. Remember to apply shampoo. > > 14. Remember to rinse shampoo out of hair. > > Now imagine this: You wake up in the morning knowing > you have to do " x " at > x time, " and you have to shower before you leave the > house. You go to get in > the shower only to realize there are no towels, wash > clothes, soap or > shampoo in the bathroom. You find a towel, only, by > the time you've found > one, you've forgotten that you also had to get a > wash cloth, soap and > shampoo. You get into the shower and start the > water, only to realize you > still don't have a wash cloth, soap, or shampoo. So > you get out of the > shower, and dry off. While drying off, you start > thinking that " DOH! I never > even got soaped up! " Having completely forgotten > that you got out of the > shower because you didn't *have* soap to soap up > with, you get back in the > shower to soap up. Only once you've restarted the > water and are ready to > soap up d you realize why you got out of the shower > in the first place - to > get soap! > > You get the idea. Now imagine that this happens with > *every* item you were > supposed to bring into the bathroom/shower with you. > Then, by the time you > have actually gathered all the things you needed for > your shower, you've > turned the water on and off so many times that you > are now OUT OF HOT WATER! > > > I'm telling you all of this because I have Been > There/Done That - more than > a few times! I, too, have gone up to three weeks > without a shower. Not out > of a lack of caring about how I look, but out of the > feeling of pure > exhaustion I get just *thinking* about all the > things I have to remember to > do/get just to be ready to *get in* the shower. Then > there is the > frustration you feel at yourself when you get out of > the shower only to > realize you still have soap on your body and/or > shampoo in your hair. Yep, > been there, done that, too! Why would anyone > *willingly* subject themselves > to that kind of frustration and physical and mental > exhaustion (it does get > physically exhausting running around trying to find > everything you need some > days) any more than they *absolutely had to*? > > Your son probably only showers once a month because > that's as often as he > can stand to go through the mental and physical > exhaustion. He probably > doesn't realize how bad it is for his body and his > health to only shower > once a month. I didn't for a long time. My theory > was " I don't see any dirt. > Showering can wait. " Only once I realized that even > if I *looked* clean, not > showering after incontinence accidents can cause > *major* infections, that I > started to shower more often. Even now, if I haven't > had any smelly bladder > or bowel issues, I may only remember to shower once > a week. > > As for brushing his teeth, again, it's a multi-step > process. Also, does he > gag easily? Does he seem to be overly sensitive to > sensory input (sight, > sound, touch, smell, taste)? If so, he may have > Sensory Integration Disorder > For someone with Sensory Integration Disorder, > brushing one's teeth can be > torture because you have to deal with trying to > brush your teeth without > triggering your gag reflex and at the same time be > able to tolerate the > sight, smell and taste of the toothpaste. It's > another one of those " Why > subject myself to it any more than absolutely > necessary? " Oh, and for > someone with Sensory Integration Disorder, going to > the dentist can be like > entering one of levels of Hell Dante describes in > " The Inferno, " so we tend > to avoid that as much as absolutely possible as > well. > > My advice to you would be to sit down with your son > and first, tell him you > are worried about his health because showering only > once a month isn't good > for your body since it allows bacteria to grow; even > if you can't see it, it > s there. Second, help him make a list of all the > things he needs to remember > to do in order to successfully complete certain > tasks. I have my whole > morning routine mapped out; including all the things > I need to make sure I > === message truncated === Quote Link to comment Share on other sites More sharing options...
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