Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 Hi Donna, Hi All! HAHAHAHA! I might be the member who moderates the requests to come on board with us, but that only makes me the gatekeeper- certainly not " in charge " , LOL! But Donna, thank you for chiming in- your points about " who is in charge " also applies to exactly what you said- ultimately, " *I* (parents/Mom/Dad) am the boss. " Just as many of our long-time members have pointed out that their kids tend to be at the extreme end of " unique " - with ultra-rare dx's, or being in the tiniest percentage for getting the rare side effect for a treatment that no one else gets, etc. etc., my Pete has his own kind of unique and our story with doctors is probably unlike anyone else on this list. Pete has had ONE doctor, our pediatrician, from birth. We had the chromosome testing done at five months just to confirm DS: one trip to a geneticist. (Yes, T21, not translocation, as I had wondered, since I had a sister with DS.) We saw a pediatric psychologist (local) for a formal dx of autism just before Pete turned 8, using the panel of tests/evals/assessments used to dx autism. Yep, he qualified. The only other medical specialist besides an eye doctor that Pete has seen to date has been a dermatologist for alopecia and acne. That, and a few visits to psychiatrists at a couple of different times which simply supported the things we were already doing with our pediatrician and some behavior supports folks. In other words, even though there is a profile out there saying that most kids with DS/ASD have more illnesses than kids with DS alone tend to have, I always said " God gave me a healthy kid with DS- he just has behaviors instead of illness! " I dare say that we have had our share of extremely challenging behaviors, and, like many of you, use a wide variety of ways to help our son navigate his life (and ours.) Since my background before motherhood was in special ed/adults with disabilities, including what was called " severe behavior handicaps " , I figured that the behavior skills I had under my belt would serve us just fine for whatever Mother Nature had sent us with Pete's extra chromosome. HAHAHAHAHA that is the sound of Mother Nature laughing. (Or as they say- we make plans- and God laughs!) Nothing had me prepared for my beautiful baby to become a preschooler who was a non-stop whirlwind in constant motion who was at the same time withdrawing from the rest of the world. I was continually stumped when our once engaging child started hurting others and became increasingly aggressive in response to environments that were not friendly to him. He was also a kid who yelled and made ungodly noises as a way to get himself out of a situation. Later on, throwing lots and lots of stuff- including heavy, big items.....sometimes targeting people very directly. Also scratching people he had decided to target, no matter how short the fingernails....also kicking people, usually little people or very old people....SIGH....and then there have been the periods of running off- and the double-dead-bolts on all the doors.... Long story short, we followed the path of " use everything that works " : -ABA (as in behavior strategies, not the Lovaas Discrete Trial Training) - has been very helpful for making decisions about how to teach new skills, changing the environment, changing *my* behaviors, etc. I used to rely on most of my training, but it was clear I needed updating. We have the Nisonger Center here, which is one of those " Centers of Excellence " , and they have provided behavior intervention supports. It has been helpful for me to have someone else's eyes and ears and thinking on a situation. Our specialist has also helped me learn to get poker-faced and go neutral when Pete is trying to rev up things with me. -Sensory interventions: Pete does best with lots of large-motor movements, such as running sprints, climbing stairs, wall push-ups, carrying heavy items, etc. Swimming, some swinging, and weight bearing exercises have all been great for him. Pete craves things to rub against his hands and/or feet, and fidget-type objects can be helpful for him. We did about three months of " therapeutic listening " in an effort to stem the screaming behaviors. Didn't really see results from that. - Meds: Pete has been on clonidine and risperdal for years- prescribed by our pediatrician after many office conferences with him; followed-along by a psychiatrist from time to time with no other changes except the addition of depakote following a very traumatic time of high anxiety in high school. We had tried some SSRI's and some of the ritalin family of meds for Pete's ADHD. We took him off of these (ritalin and SSRI's) due to side effects. Our pediatrician has always worked collaboratively with us. We have been fortunate to have someone who has always listened to us but has also seen Pete as a whole person, and from birth. NOTE: Pete never gained more than about 9# on risperdal. We suspect that risperdal has helped stimulate his language to some extent, since he had a spurt after age 10 and went from what I would say was non-verbal to becoming someone who talks. Our pediatrician has his liver functioning and other bloodwork done tested frequently. -Pete has been on synthroid since age 13. Dx'ed and prescribed by our pediatrician, with thorough follow-alongs ever since. (i.e., never saw an endocrinologist for this.) Double-checking on thyroid levels has always been our first response when behaviors start to go in the wrong direction. Sometimes it has been the culprit; sometimes there were things going on at school that needed to be changed. -Speech-language-communication: always one of our top areas of concern- continually striving to improve/increase/unlock ways for Pete to communicate has yielded some pretty good results. But it took EIGHT years for our school/team supports to help us get a communication device. In the meantime, we used lots of visual strategies and music to help Pete in this area. (NOTE: I would say that this list helped us more than any other resource when it came to working on visual strategies. Our list owner, Joan Medlen, constantly provided enormous resources for us. Please look through the archives for some of these threads. Always, always relevant.) Diet: well, following the axiom, " if it ain't broke, don't fix it " , Pete has always been on the normal growth charts and has never had any food allergies or gut problems. (At 19, he is 5' 3 1/2 " and weighs 157#. ) He eats a wide variety of foods (never had the extremely picky autism-eater problems) and except for a few texture challenges (very chewy meats; no gummy candies; no carbonated beverages- he abhors the sensation, and no icy cold treats) he has never had anything approaching gut or diet problems. Due to my DH and my own life-long weight challenges, we have worked hard to give Pete healthy choices, and we limit excess snacks and fried foods, offer lots of water, eat high-fiber, nutrient dense foods. He eats dairy, some sugar, and gluten. He has never had to take a laxative or anti- diarrheal. School: public school, starting with a little inclusion, has always been a huge challenge. I don't know what I would have or could have done differently, other than insist on a change more quickly when things started to fall apart in middle school and then, after two fairly good years of high school (self-contained " multiple disabilities " classroom at the time) totally collapsed with the loss of our good team support folks. Pete now attends a small school for kids with autism. It is not perfect, but he is happy to go to school every day and he is being challenged to work on new skills. Being that Pete has been arrested (charges dismissed) for " assaulting " an aide during that third year in high school- I would say that we are one of those families whose challenges are on the higher end of disruptive/aggressive/mental health line of things. For the most part, I think that Pete resembles Sara's Elie in many ways- similar OCD behaviors, some language, and responding best to fairly well-controlled environments. What I am saying (after all this time) is that we have never gone to a clinic for more info, or had Pete dx'ed by any of the few heavy hitters that are out there. THAT being said, we did participate in a research study through the Cincinnati Children's Dual Dx clinic. They were looking at markers in kids with DS that might point out autism- ultimately, looking to discover if a blood test could dx autism, with or without DS. Since our experience with their dual dx clinic, I would heartily recommend anyone looking for a good dx to go to Cincinnati Children's. We never met Bonnie , but the clinic folks were incredible! They treated us really, really well, and enjoyed meeting Pete. The sense of support was tremendous. If we lived closer and didn't have such an excellent pediatrician we'd be going there, no doubt. And a final caveat: like anything else, meds are not a " magic bullet " . They are only ONE PART of a all the strategies we employ every day to keep Pete's life moving forward. From what I have been able to figure out, they help him with a window of opportunity to be able to be calm enough and focused enough to learn new skills, especially communication; these then help forge social bonds and a willingness to follow directions and be out and about a bit more in the world. So that's our story, for new members, and this ongoing discussion. It's helpful to hear from lots of folks on this one! God bless us, every one! -- Beth 19 y/o Pete's Mum Central Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 Yup - behaviors rather than health issues - HAIL ALL!! Guess we should be grrateful. I must think about that. On Fri, Jan 15, 2010 at 3:01 PM, Beth wrote: > > > Hi Donna, Hi All! > > HAHAHAHA! I might be the member who moderates the requests to come > on board with us, but that only makes me the gatekeeper- certainly > not " in charge " , LOL! > > But Donna, thank you for chiming in- your points about " who is in > charge " also applies to exactly what you said- ultimately, " *I* > (parents/Mom/Dad) am the boss. " > > Just as many of our long-time members have pointed out that their > kids tend to be at the extreme end of " unique " - with ultra-rare dx's, > or being in the tiniest percentage for getting the rare side effect > for a treatment that no one else gets, etc. etc., my Pete has his own > kind of unique and our story with doctors is probably unlike anyone > else on this list. > > Pete has had ONE doctor, our pediatrician, from birth. We had the > chromosome testing done at five months just to confirm DS: one trip > to a geneticist. (Yes, T21, not translocation, as I had wondered, > since I had a sister with DS.) > > We saw a pediatric psychologist (local) for a formal dx of autism > just before Pete turned 8, using the panel of tests/evals/assessments > used to dx autism. Yep, he qualified. > > The only other medical specialist besides an eye doctor that Pete has > seen to date has been a dermatologist for alopecia and acne. That, > and a few visits to psychiatrists at a couple of different times > which simply supported the things we were already doing with our > pediatrician and some behavior supports folks. > > In other words, even though there is a profile out there saying that > most kids with DS/ASD have more illnesses than kids with DS alone > tend to have, I always said " God gave me a healthy kid with DS- he > just has behaviors instead of illness! " I dare say that we have had > our share of extremely challenging behaviors, and, like many of you, > use a wide variety of ways to help our son navigate his life (and > ours.) > > Since my background before motherhood was in special ed/adults with > disabilities, including what was called " severe behavior handicaps " , > I figured that the behavior skills I had under my belt would serve us > just fine for whatever Mother Nature had sent us with Pete's extra > chromosome. > > HAHAHAHAHA that is the sound of Mother Nature laughing. (Or as they > say- we make plans- and God laughs!) > > Nothing had me prepared for my beautiful baby to become a preschooler > who was a non-stop whirlwind in constant motion who was at the same > time withdrawing from the rest of the world. I was continually > stumped when our once engaging child started hurting others and > became increasingly aggressive in response to environments that were > not friendly to him. He was also a kid who yelled and made ungodly > noises as a way to get himself out of a situation. Later on, > throwing lots and lots of stuff- including heavy, big > items.....sometimes targeting people very directly. Also scratching > people he had decided to target, no matter how short the > fingernails....also kicking people, usually little people or very old > people....SIGH....and then there have been the periods of running > off- and the double-dead-bolts on all the doors.... > > Long story short, we followed the path of " use everything that works " : > > -ABA (as in behavior strategies, not the Lovaas Discrete Trial > Training) - has been very helpful for making decisions about how to > teach new skills, changing the environment, changing *my* behaviors, > etc. I used to rely on most of my training, but it was clear I needed > updating. We have the Nisonger Center here, which is one of those > " Centers of Excellence " , and they have provided behavior intervention > supports. It has been helpful for me to have someone else's eyes and > ears and thinking on a situation. Our specialist has also helped me > learn to get poker-faced and go neutral when Pete is trying to rev up > things with me. > > -Sensory interventions: Pete does best with lots of large-motor > movements, such as running sprints, climbing stairs, wall push-ups, > carrying heavy items, etc. Swimming, some swinging, and weight > bearing exercises have all been great for him. Pete craves things to > rub against his hands and/or feet, and fidget-type objects can be > helpful for him. We did about three months of " therapeutic > listening " in an effort to stem the screaming behaviors. Didn't > really see results from that. > > - Meds: Pete has been on clonidine and risperdal for years- > prescribed by our pediatrician after many office conferences with > him; followed-along by a psychiatrist from time to time with no other > changes except the addition of depakote following a very traumatic > time of high anxiety in high school. We had tried some SSRI's and > some of the ritalin family of meds for Pete's ADHD. We took him off > of these (ritalin and SSRI's) due to side effects. Our pediatrician > has always worked collaboratively with us. We have been fortunate to > have someone who has always listened to us but has also seen Pete as > a whole person, and from birth. > > NOTE: Pete never gained more than about 9# on risperdal. We suspect > that risperdal has helped stimulate his language to some extent, > since he had a spurt after age 10 and went from what I would say was > non-verbal to becoming someone who talks. Our pediatrician has his > liver functioning and other bloodwork done tested frequently. > > -Pete has been on synthroid since age 13. Dx'ed and prescribed by > our pediatrician, with thorough follow-alongs ever since. (i.e., > never saw an endocrinologist for this.) Double-checking on thyroid > levels has always been our first response when behaviors start to go > in the wrong direction. Sometimes it has been the culprit; sometimes > there were things going on at school that needed to be changed. > > -Speech-language-communication: always one of our top areas of > concern- continually striving to improve/increase/unlock ways for > Pete to communicate has yielded some pretty good results. But it > took EIGHT years for our school/team supports to help us get a > communication device. In the meantime, we used lots of visual > strategies and music to help Pete in this area. (NOTE: I would say > that this list helped us more than any other resource when it came to > working on visual strategies. Our list owner, Joan Medlen, > constantly provided enormous resources for us. Please look through > the archives for some of these threads. Always, always relevant.) > > Diet: well, following the axiom, " if it ain't broke, don't fix it " , > Pete has always been on the normal growth charts and has never had > any food allergies or gut problems. (At 19, he is 5' 3 1/2 " and > weighs 157#. ) He eats a wide variety of foods (never had the > extremely picky autism-eater problems) and except for a few texture > challenges (very chewy meats; no gummy candies; no carbonated > beverages- he abhors the sensation, and no icy cold treats) he has > never had anything approaching gut or diet problems. Due to my DH > and my own life-long weight challenges, we have worked hard to give > Pete healthy choices, and we limit excess snacks and fried foods, > offer lots of water, eat high-fiber, nutrient dense foods. He eats > dairy, some sugar, and gluten. He has never had to take a laxative > or anti- diarrheal. > > School: public school, starting with a little inclusion, has always > been a huge challenge. I don't know what I would have or could have > done differently, other than insist on a change more quickly when > things started to fall apart in middle school and then, after two > fairly good years of high school (self-contained " multiple > disabilities " classroom at the time) totally collapsed with the loss > of our good team support folks. Pete now attends a small school for > kids with autism. It is not perfect, but he is happy to go to school > every day and he is being challenged to work on new skills. > > Being that Pete has been arrested (charges dismissed) for > " assaulting " an aide during that third year in high school- I would > say that we are one of those families whose challenges are on the > higher end of disruptive/aggressive/mental health line of things. > > For the most part, I think that Pete resembles Sara's Elie in many > ways- similar OCD behaviors, some language, and responding best to > fairly well-controlled environments. > > What I am saying (after all this time) is that we have never gone to > a clinic for more info, or had Pete dx'ed by any of the few heavy > hitters that are out there. > > THAT being said, we did participate in a research study through the > Cincinnati Children's Dual Dx clinic. They were looking at markers in > kids with DS that might point out autism- ultimately, looking to > discover if a blood test could dx autism, with or without DS. > > Since our experience with their dual dx clinic, I would heartily > recommend anyone looking for a good dx to go to Cincinnati > Children's. We never met Bonnie , but the clinic folks were > incredible! They treated us really, really well, and enjoyed meeting > Pete. The sense of support was tremendous. If we lived closer and > didn't have such an excellent pediatrician we'd be going there, no > doubt. > > And a final caveat: like anything else, meds are not a " magic > bullet " . They are only ONE PART of a all the strategies we employ > every day to keep Pete's life moving forward. From what I have been > able to figure out, they help him with a window of opportunity to be > able to be calm enough and focused enough to learn new skills, > especially communication; these then help forge social bonds and a > willingness to follow directions and be out and about a bit more in > the world. > > So that's our story, for new members, and this ongoing discussion. > It's helpful to hear from lots of folks on this one! > > God bless us, every one! > > -- > Beth > 19 y/o Pete's Mum > Central Ohio > > -- Sara- different pathways lead to Nirvana. Quote Link to comment Share on other sites More sharing options...
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