Guest guest Posted January 23, 2001 Report Share Posted January 23, 2001 Sorry about your shitty day! That's the medical terminology for it. Hopefully tomorrow will be sunnier. We've all been there. Fortunately we get to sleep in between or we'd jump off the nearest cliff! (taking ER docs with us hopefully)... remember to laugh, Barbra M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 , Been there--done that!! Those questionaires drive me crazy too. I keep a pamphlet on CHARGE in my purse at all times so I don't have to explain it (no one ever knows what it is). Get a good night's sleep and things will be better tom., they always are. Nicol mom to 7 CHARGE and Jordan 3 At 01:03 AM 1/24/01 -0000, you wrote: >Hi Guys, >I just need a place to vent my frustration and saddness. My husband >is out of town working and will be gone quite some time so I have >lost >my main support. > >Today started off bad. Nic woke up at 4:00 and did not want to go >back >to sleep. This is starting to be a common occurance. This I can deal >with. At about 6:30 he fell down in bed and cut his lip on his sippy >cup. Needless to say he bled like a stuck pig. It quit bleeding >fairly quickly and he looked like he had a nice fat lip. He actually >fell asleep about 30 minutes later. This of course was about the time >my 18 month old decided to wake up. I made the decision to let Nic >sleep and cancelled school for him. My 18 month old had a well baby >check-up at 10:00 and I called ahead and asked it the Ped. could take >a look at Nic's ears and of course his cut lip. We got to the appt >with little fuss but as soon as the Ped saw Nic's lip she told me >that >he would need stitches to keep it together. The cut comes across his >lip line into his skin at the edge of his mouth. She did not want to >tackle this in her office so she sent us to the ER. By now I have 2 >hungry tired kids and this was the last place I wanted to go. Thank >God my mom could leave work and meet me to take care of the little >one >while I got Nic taken care of. I started to fall to pieces when the >intake nurse pulled out a developmental questionnaire.He wanted to >know what his developmental age was. This was the last thing I want >to >discuss with a ER nurse. I have been feeling very sad latley about >Nic's development and worried about the future....you all know the >drill. Anyway I say to the nurse what does his development have to do >with him getting stitches and he says that it is just standard to >have >all parents fill them out. OK Ok I tell him and proceed to fill out >his #%$%$%$%$ from with of course all no's(meaning my son can not do >wahtever skill they are asking about) which make me feel horrible and >I start to cry. I explain to the nurse that Nic is in EI and is >getting all the services possible. I handled the situation very >poorly >but I tried to explain about CHARGE and it's implications. Anyway we >eventually meet the Dr. all the while Nic is pinching, biting, and >pulling my hair. This is what he does when he is stressed out. The >Dr. >decides that in light of Nic's history that his lip will heal on its >own with maybe a small scar but does not want to traumatize him for >the stitches. UUGH!! anyway saw 2 Dr's in the ER. Neither one had >heard of CHARGE and they proceed to tell me what a " good job " I'm >doing under all the pressure, which of course makes me start crying >again. Nic is fine and we are back home and he is sleeping now. I >just >needed to let it out and I know you will understand. I have been >feeling sad for a while now and I guess today just broke me. I just >really HATE those development questionnaires. > >Thanks for listening. > L. Nics mom and Josh's too. >Eugene Ore > > > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July >20-22, 2001. Information will be available first in CHARGE Accounts, the >CHARGE Syndrome Foundation's newsletter. " > >For information about the CHARGE Syndrome >Foundation or to become a member (and get the newsletter) >please contact marion@... or visit >the CHARGE Syndrome Foundation web page >at http://www.chargesyndrome.org > > Nicol mom to 7 CHARGE and Jordan 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 Dear , I hear you about those questionnaires. They really don't apply to the CHARGErs as their experiences are so far off from typical. It is really hard to use the type of measuring 'device' that is used with typical kids. We had an experience where a developmental evaluator was marking Kendra down for not being able to do her bathing at barely age 3. Due to the trach and gastrostomy and never wanting to mix the different infections that could be in either (and due to some tone issues), we always did Kendra's washing in the tub for her. The evaluator really thought it was delayed that she couldn't do this herself. The point was that she was capable of doing it, (she could wash dolls quite well) she just did not have the opportunity due to other factors to wash herself. The evaluator was not impressed that Kendra had the skills to wash the dolls. It seems to me there should be different measures for kids who have such a different early life experience. I'm reminded of classic problems with some IQ tests. In the classic tests, when children were asked what color a banana is, many were marked down for replying black instead of yellow. In some neighborhoods the food can be extremely old by the time the fruit gets to the store. In some of those cases, the banana is actually black that the child sees at the market. As a result of those kinds of inadequacies in assessment, I believe it is *no longer legal* to test the IQ of a black child in the United States. Not under any circumstances. It would make sense to me for IQ tests or developmental profiles to be devised that allow for the extreme early experiences of our kids or to not allow them at all. I'm glad Nic's lip will heal! What a day!! Mom to Kendra, and Camille California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 , As if we don't have enough stress dealing with our children on a daily basis! These events which are not uncommon to all of us ER trips, Dr visits, ect are so stressful. I empathize with you I have been in a situation sillier to your in the past and it is so difficult. I can relate to the statement about the future too. My Mark is 17 and it gets no easier. V. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 , My goodness what a long, difficult day you had. Those stupid questionnaires drive me up the wall too. Most of the time it's to see if you are properly taking care of your kid which annoys me even further. ARGH! I just want you to know that they've upset me in the past too, so I know how you're feeling, with the added pressure of hubby being away, less than perfect sleep, the stress of his lip accident, that'd be enough to have me bawling too! I know it's hard but just remember that Nic will do things on "his own timeline" and won't follow the rubber stamped blueprints of development these yahoos want to push on every kid. They are stubborn, they will do things when they bloody well want to (even though sometimes you know they could do it before they actually do!) It's pretty common with CHARGErs, I don't think there's been too many of them that can go and check those dev. checklists on cue when they're supposed to have stuff done. Hopefully you are having a better day today! Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/kawfolksICQ #1426476 a horrible day...... Hi Guys,I just need a place to vent my frustration and saddness. My husband is out of town working and will be gone quite some time so I havelost my main support.Today started off bad. Nic woke up at 4:00 and did not want to goback to sleep. This is starting to be a common occurance. This I can deal with. At about 6:30 he fell down in bed and cut his lip on his sippy cup. Needless to say he bled like a stuck pig. It quit bleeding fairly quickly and he looked like he had a nice fat lip. He actually fell asleep about 30 minutes later. This of course was about the time my 18 month old decided to wake up. I made the decision to let Nic sleep and cancelled school for him. My 18 month old had a well baby check-up at 10:00 and I called ahead and asked it the Ped. could take a look at Nic's ears and of course his cut lip. We got to the appt with little fuss but as soon as the Ped saw Nic's lip she told methat he would need stitches to keep it together. The cut comes across his lip line into his skin at the edge of his mouth. She did not want to tackle this in her office so she sent us to the ER. By now I have 2 hungry tired kids and this was the last place I wanted to go. Thank God my mom could leave work and meet me to take care of the littleone while I got Nic taken care of. I started to fall to pieces when the intake nurse pulled out a developmental questionnaire.He wanted to know what his developmental age was. This was the last thing I wantto discuss with a ER nurse. I have been feeling very sad latley about Nic's development and worried about the future....you all know the drill. Anyway I say to the nurse what does his development have to do with him getting stitches and he says that it is just standard tohave all parents fill them out. OK Ok I tell him and proceed to fill out his #%$%$%$%$ from with of course all no's(meaning my son can not do wahtever skill they are asking about) which make me feel horrible and I start to cry. I explain to the nurse that Nic is in EI and is getting all the services possible. I handled the situation verypoorly but I tried to explain about CHARGE and it's implications. Anyway we eventually meet the Dr. all the while Nic is pinching, biting, and pulling my hair. This is what he does when he is stressed out. TheDr. decides that in light of Nic's history that his lip will heal on its own with maybe a small scar but does not want to traumatize him for the stitches. UUGH!! anyway saw 2 Dr's in the ER. Neither one had heard of CHARGE and they proceed to tell me what a "good job" I'm doing under all the pressure, which of course makes me start crying again. Nic is fine and we are back home and he is sleeping now. Ijust needed to let it out and I know you will understand. I have been feeling sad for a while now and I guess today just broke me. I just really HATE those development questionnaires. Thanks for listening. L. Nics mom and Josh's too.Eugene Ore"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2001 Report Share Posted January 24, 2001 Nicol, That's excellent, I keep those pamphlets with me as well, with Kennedy's "CHARGE" highlighted in yellow and my little notes in the margins. They have come in handy many times. Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/kawfolksICQ #1426476 Re: a horrible day...... ,Been there--done that!! Those questionaires drive me crazy too. I keep apamphlet on CHARGE in my purse at all times so I don't have to explain it(no one ever knows what it is). Get a good night's sleep and things will be better tom., they always are.Nicol mom to 7 CHARGE and Jordan 3At 01:03 AM 1/24/01 -0000, you wrote:>Hi Guys,>I just need a place to vent my frustration and saddness. My husband >is out of town working and will be gone quite some time so I have>lost >my main support.>>Today started off bad. Nic woke up at 4:00 and did not want to go>back >to sleep. This is starting to be a common occurance. This I can deal >with. At about 6:30 he fell down in bed and cut his lip on his sippy >cup. Needless to say he bled like a stuck pig. It quit bleeding >fairly quickly and he looked like he had a nice fat lip. He actually >fell asleep about 30 minutes later. This of course was about the time >my 18 month old decided to wake up. I made the decision to let Nic >sleep and cancelled school for him. My 18 month old had a well baby >check-up at 10:00 and I called ahead and asked it the Ped. could take >a look at Nic's ears and of course his cut lip. We got to the appt >with little fuss but as soon as the Ped saw Nic's lip she told me>that >he would need stitches to keep it together. The cut comes across his >lip line into his skin at the edge of his mouth. She did not want to >tackle this in her office so she sent us to the ER. By now I have 2 >hungry tired kids and this was the last place I wanted to go. Thank >God my mom could leave work and meet me to take care of the little>one >while I got Nic taken care of. I started to fall to pieces when the >intake nurse pulled out a developmental questionnaire.He wanted to >know what his developmental age was. This was the last thing I want>to >discuss with a ER nurse. I have been feeling very sad latley about >Nic's development and worried about the future....you all know the >drill. Anyway I say to the nurse what does his development have to do >with him getting stitches and he says that it is just standard to>have >all parents fill them out. OK Ok I tell him and proceed to fill out >his #%$%$%$%$ from with of course all no's(meaning my son can not do >wahtever skill they are asking about) which make me feel horrible and >I start to cry. I explain to the nurse that Nic is in EI and is >getting all the services possible. I handled the situation very>poorly >but I tried to explain about CHARGE and it's implications. Anyway we >eventually meet the Dr. all the while Nic is pinching, biting, and >pulling my hair. This is what he does when he is stressed out. The>Dr. >decides that in light of Nic's history that his lip will heal on its >own with maybe a small scar but does not want to traumatize him for >the stitches. UUGH!! anyway saw 2 Dr's in the ER. Neither one had >heard of CHARGE and they proceed to tell me what a "good job" I'm >doing under all the pressure, which of course makes me start crying >again. Nic is fine and we are back home and he is sleeping now. I>just >needed to let it out and I know you will understand. I have been >feeling sad for a while now and I guess today just broke me. I just >really HATE those development questionnaires. >>Thanks for listening.> L. Nics mom and Josh's too.>Eugene Ore>>>"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July>20-22, 2001. Information will be available first in CHARGE Accounts, the>CHARGE Syndrome Foundation's newsletter.">>For information about the CHARGE Syndrome >Foundation or to become a member (and get the newsletter)>please contact marion@... or visit >the CHARGE Syndrome Foundation web page >at http://www.chargesyndrome.org>>Nicol mom to 7 CHARGE and Jordan 3"5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2001 Report Share Posted January 25, 2001 Hi Tim, Thanks for the correction about the IQ tests. I had gotten the information last year from a state source on mental retardation and so I thought it was up to date. I'm sorry for the misinformation and glad you corrected it. The " banana " questions were part of some tests previously (in the 60s and 70's) and were at least part of what led to the banning of the tests in the African American population. I am really looking forward to your and Rob Last's presentation. It will be very great I am sure! This is a topic of interest to a lot of us! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2001 Report Share Posted January 25, 2001 Hi , I have to correct a little misperception about IQ tests. Actually, they can legally be given to anyone who requires one. Some restrictions were place on IQ testing in California of African American children for the purpose of diagnosing mental retardation back in the 70's, and that order was expanded to a few other western states. However, the order was challenged by a group of black parents who said it discriminated against their children, and the order was finally modified (by the same judge, no less). Regarding particular questions, some have always been challenged from time to time based on claims that certain items discriminate due to different experiences. But I have to say that the items are very carefully tested on children who represent all ethnic groups. It would be the rare child who does not know that a banana is yellow, even if they don't see many of them that color (I don't know of any IQ test that actually has this item, although I have to confess I am not up-to-date with the more recent editions). IQ tests do have many significant limitations, particularly when administered to children with sensory problems, and so the point you were making was quite accurate. Rob Last and I will be addressing assessment issues like this at the CHARGE conference. Tim Hartshorne, father of Keedy wrote: > Dear , > I hear you about those questionnaires. They really don't apply to the > CHARGErs as their experiences are so far off from typical. It is really > hard to use the type of measuring 'device' that is used with typical > kids. We had an experience where a developmental evaluator was marking > Kendra down for not being able to do her bathing at barely age 3. Due to > the trach and gastrostomy and never wanting to mix the different infections > that could be in either (and due to some tone issues), we always did > Kendra's washing in the tub for her. The evaluator really thought it was > delayed that she couldn't do this herself. The point was that she was > capable of doing it, (she could wash dolls quite well) she just did not > have the opportunity due to other factors to wash herself. The evaluator > was not impressed that Kendra had the skills to wash the dolls. It seems to > me there should be different measures for kids who have such a different > early life experience. I'm reminded of classic problems with some IQ > tests. In the classic tests, when children were asked what color a banana > is, many were marked down for replying black instead of yellow. In some > neighborhoods the food can be extremely old by the time the fruit gets to > the store. In some of those cases, the banana is actually black that the > child sees at the market. As a result of those kinds of inadequacies in > assessment, I believe it is *no longer legal* to test the IQ of a black > child in the United States. Not under any circumstances. > It would make sense to me for IQ tests or developmental profiles to be > devised that allow for the extreme early experiences of our kids or to not > allow them at all. > I'm glad Nic's lip will heal! What a day!! > > Mom to Kendra, and Camille > California > > " 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, July > 20-22, 2001. Information will be available first in CHARGE Accounts, the > CHARGE Syndrome Foundation's newsletter. " > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2001 Report Share Posted January 25, 2001 , Hope you are feeling happier now. I know how you feel. Just when you start to feel as if things aren't too bad something or someone comes along and bursts your bubble! Elaine mum to Elise (8yrs) & Jack (3yrs) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2001 Report Share Posted January 25, 2001 - If it makes you feel any better, we (the PTs & OTs) in the E.I. program here have spent almost a year looking for questionnaires and evaluation tools to help us asses our " non-typical " kids. With all of our searching, we still can't find anything we're happy with. The available resources are rotten, so try not to let it get you down. The wonderful child Nic is will never be able to be measured on paper anyway. Things will get better, keep the faith. Kate (PT to a CHARGEr, Ohio) _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2001 Report Share Posted January 27, 2001 In our trips to the ER, we have never had a nurse attempt to administer a developmental questionnaire. Is this really something you have to submit to? Can't you just refuse, particuarly when it is something that any kid could have like a split lip? Unless there is some clear evidence of neglect, it seems awfully intrusive for the hospital to decide that want to explore this issue without any request by anybody... P.S. Please note my new e-mail address...I finally got rid of AOL! -Mike Schwartz in Ventura, California, father of 3-year-old twin boys (CHaRGE) and _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
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