Guest guest Posted March 30, 2007 Report Share Posted March 30, 2007 Greetings Michele, I am very new to the group but my son has had ME/CFIDS for just over 2 years now. He is now 14 years old. Before his illness he was a healthy, very intelligent kid. He also swam comptetively (it was not uncommon for practice - 4 times a week - to be over 4000 yards) and very good at it as well placing very high in regional championships. By last summer he was so debilitated that he could not lift ONE pound. He is light and sound sensitive, hardly eats because he feels full so quickly (we are working on meds with that), cognitively impaired, Orthostatic Intolerance, and on and on. Also last year he was so badly off with the OI that he had to place his hand on my shoulder when we were out anywhere because his balance was so messed up. In August of last year he started in physical therapy and worked diligently and hard. He would be grumpy and in lots of pain afterwards but he did his exercises between sessions (he only went 2 times per week) and kept a pain log for the therapist. She monitored his " workouts " very closely. End result for him - his cardiovascular strength has improved greatly and he is much more able to walk a short distance, stand for a while, lift things - he can even help to make his bed! It is my conviction that the therapist must be experienced in dealing with patients with ME/CFIDS, must work closely with the doctors involved, must be excellent observers and listeners (to the patient and caregivers). I also am not certain that PT done any other way will help. Each time we went to a session my son had to struggle to get there - walking from the car to the door etc. but in his case I was really pleased the other day to actually see him jump! (We would celebrate for weeks if we could get the cognitive stuff taken care of.) I have no idea if this is of ANY help to you.... Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 michele wrote: > has anyone here ever tried physical therapy? did you have any success? > > I am a bit hesistant because just getting to the place IS physical > therapy for me and always wears me out. I am concerned that if I then > follow that with physical therapy, my body will deliver to me a > big 'scerw you' lol and I will just get worse > > I have had both: physical therapy that caused me to crash, and physical therapy that helps. The key, as someone else noted, is having a physical therapist who understands something about this illness OR is eager to learn, and who watches you very closely and respects your feedback, without having any expectations that you will be able to do what " normal " people do. My current physical therapist for my arthritic knee has an unusual treadmill: it has a big, solid frame that you can rest your forearms on, to take some weight off the knees. The first time I tried it, I managed 1 minute 15 seconds at 0.5 mph. I only do this once a week, but the last time (after about 2 months) I was up to 8 minutes plus a little, and got up to 0.8 mph for part of that (ramping up and ramping down). My therapist is very excited, and says I'm his most motivated patient! But he also respects that I am the one living in this body, and know it best, so there are days when I can only do 5 minutes on the treadmill and that's OK. Also, when doing the exercises (like knee extensions with light ankle weights, or hamstring pulls with elastic tubing), we don't do a set number of repetitions or sets, but just exercise until the muscle starts to tire slightly. As far as the energy involved in just GETTING to PT, I hear you! One tactic I use is to only go to places with handicapped parking and no stairs (or an elevator). Another is to take a shower the evening before (I find showering very tiring, and can't manage a shower PLUS getting dressed PLUS driving PLUS physical therapy!). I also generally pick out the evening before what I'm going to wear, so I don't have to expend any thought energy on that. Drink plenty of water before and after PT, and allow yourself to rest (in your car or in the waiting area of the PT clinic) after PT rather than dashing off. Remember to take deep breaths. Have a little something to eat ready in your car (an energy bar, an apple, almonds, whatever works for you). And for the first few visits, don't plan to do ANYTHING but go back home and rest afterwards. I have made the mistake of thinking, " well, I'm out already, showered and dressed, I'll just run a couple errands before going home " . Don't! The worst is trying to go food shopping immediately after PT in a store that doesn't have electric carts, and then having to carry in all the groceries yourself. Just don't do it. The other physical therapy clinic I go to, for my back, also has Pilates taught by the physical therapists. This is great stuff, and really helps - I just can't do the mat work, as getting down on the floor and getting up again takes too much energy and is too difficult with an arthritic knee. I've actually gone to Pilates equipment classes off and on over the last couple years, and just tailored it to my needs - doing 3 minutes and resting 3 minutes per station rather than doing 6 minutes per station, for instance. And skipping altogether certain stations if there were no exercises I could do without pain or dizziness. Having a physical therapist lead the class is great, especially if it's one of the therapists who has worked on you - they can tailor the exercises to your body and your energy level. The Pilates helps ALOT with both back pain and postural strength (i.e., being able to stand up without collapsing after 5 minutes). You just have to avoid trying to " keep up " with the normal folks in the class, and give yourself permission to stop altogether whenever it's too much. There were days when I was recovering from a crash, not 100%, and only did 20 minutes of the 70 minutes class (and that was with little rest breaks all through it). What I've discovered over the years is that any little bit of therapy or exercise I can do is better than doing nothing. The little bits do add up. And contrary to what the " experts " tell us, you don't necessarily have to do it 3x/wk to get a benefit from it. Even once a week, I've been able to increase strength and stamina. Hope that helps! -- " wake now! Discover that YOU are the song that the morning brings... " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2007 Report Share Posted September 17, 2007 You say you feel there is more the PT could be doing with your child, do you have anything in particular in mind? Have you discussed this with her? It could also be that your son has plateaued and may need a break from PT. As a Developmental Specialist/Support Coordinator in an Early Intervention program I have seen both sides of the picture. When parents have voiced concern about their child's program, I first ask them what they want to see happening, then give them suggestions for addressing their concerns with the therapists. But sometimes children hit a plateau of progress, so the team (parent, therapist and me, as Support Coordinator) decide if a break is needed or maybe backing off the number of visits. This time off gives us a better picture of what's needed. Some kids continue to progress on their own. For others it becomes more obvious what skills need more work, or if there are " interferring " factors, such as sensory integration issues that need to be addressed. I also remind parents that just because our program will pay for services, not all kids need all services - some kids get overwhelmed by too much " work " , and others will make progress by the parents " training " the kids following training from the developmental specialist or consultation from specific therapists. One of our goals in our EI program is to empower the parents to take the lead for their kids, whether it's advocating for what they need or asking to be taught how to " do the 'therapies' " with their kids themselves, too so they can incorporate the teaching into everyday situations. Also, I run into families who get upset because the therapists " are just playing with the kid " . Remember though, kids need to be kids - even those with special needs - and kids learn best through play. I've seen speech therapists using singing to teach speech, physical therapists playing catch to teach balance and motor planning, occupational therapists using playdough activities to build hand strength and fine motor control. As a developmental therapist, I help parents incorporate ideas from therapists into everyday situations as well as playing games and other activities to help build cognitive skills in the children. For the most part, the therapists I work with are very open to parents' questions, concerns and suggestions. So, step up and speak to your PT directly about your concerns. If she doesn't respond well take it up with your service/support coordinator. --- gabeandevansmom wrote: > For those of you who have children who are walking > without an > assistive device such as a walker etc. I am > wondering what type of > activities your physical therapist does with your > child. > > I am very unhappy with our therapist, literally all > she does is follow > Evan around while he walks or has him practice the > stairs. That is it, > I feel there is more she could be doing with him. So > I am just wanting > to get other parental opinions. > > Thanks > > mom to Evan 34 months, L Spastic Hemiplegia, > BPP > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2007 Report Share Posted September 17, 2007 When I first wrote this post I was reall y not sure what else she could be doing and I was looking for ideas of things that Evan could be working on. Now that I have read some of the respones these are the things I would like her to work on: Jumping Trunk control on left side riding a tricycle catching or holding with both hands balance endurance The therapy place that he is in made it clear from the beginning that they work on getting a child to walk and to be able to do stairs and curbs, but they do not work on any refining of the gait etc. The therapist just did a six month eval and told me that she is going to recommend cutting his therapy down to 1x a month. So that means he will basically have 30 minutes of PT every month. I am in the process of requesting a new therapy center. He is transistioning to the school district so that is a whole different can of worms I am having to deal with now. Thanks for the ideas Avenenti ston wrote: You say you feel there is more the PT could be doing with your child, do you have anything in particular in mind? Have you discussed this with her? It could also be that your son has plateaued and may need a break from PT. As a Developmental Specialist/Support Coordinator in an Early Intervention program I have seen both sides of the picture. When parents have voiced concern about their child's program, I first ask them what they want to see happening, then give them suggestions for addressing their concerns with the therapists. But sometimes children hit a plateau of progress, so the team (parent, therapist and me, as Support Coordinator) decide if a break is needed or maybe backing off the number of visits. This time off gives us a better picture of what's needed. Some kids continue to progress on their own. For others it becomes more obvious what skills need more work, or if there are " interferring " factors, such as sensory integration issues that need to be addressed. I also remind parents that just because our program will pay for services, not all kids need all services - some kids get overwhelmed by too much " work " , and others will make progress by the parents " training " the kids following training from the developmental specialist or consultation from specific therapists. One of our goals in our EI program is to empower the parents to take the lead for their kids, whether it's advocating for what they need or asking to be taught how to " do the 'therapies' " with their kids themselves, too so they can incorporate the teaching into everyday situations. Also, I run into families who get upset because the therapists " are just playing with the kid " . Remember though, kids need to be kids - even those with special needs - and kids learn best through play. I've seen speech therapists using singing to teach speech, physical therapists playing catch to teach balance and motor planning, occupational therapists using playdough activities to build hand strength and fine motor control. As a developmental therapist, I help parents incorporate ideas from therapists into everyday situations as well as playing games and other activities to help build cognitive skills in the children. For the most part, the therapists I work with are very open to parents' questions, concerns and suggestions. So, step up and speak to your PT directly about your concerns. If she doesn't respond well take it up with your service/support coordinator. --- gabeandevansmom wrote: > For those of you who have children who are walking > without an > assistive device such as a walker etc. I am > wondering what type of > activities your physical therapist does with your > child. > > I am very unhappy with our therapist, literally all > she does is follow > Evan around while he walks or has him practice the > stairs. That is it, > I feel there is more she could be doing with him. So > I am just wanting > to get other parental opinions. > > Thanks > > mom to Evan 34 months, L Spastic Hemiplegia, > BPP > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Our son receives PT through the school district and they have been working on his balance and coordination. For example: standing on one foot, jumping over a rope or line with both feet together, stretching and strengthening both lower and upper muscles, working on walking up and down stairs without bouncing off the walls, etc. His body is stiff and and we are also working on him to relax his muscles (not to be so tight). We have seen a lot of improvement with his balance. He also sees a OT for fine motor delay and another OT therapist for Sensory Integration therapy. We are meeting next week to request that they start meeting with Jake twice a week instead of once per the suggestion of his neurologist. Hope that helps. Tracie Mom to Jake, 6 years gabeandevansmom wrote: For those of you who have children who are walking without an assistive device such as a walker etc. I am wondering what type of activities your physical therapist does with your child. I am very unhappy with our therapist, literally all she does is follow Evan around while he walks or has him practice the stairs. That is it, I feel there is more she could be doing with him. So I am just wanting to get other parental opinions. Thanks mom to Evan 34 months, L Spastic Hemiplegia, BPP --------------------------------- Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 That helps a lot. I am so mad because now she wants to cut him down to 1x a month, so he will be getting therapy 30 mintues a month. I am going to go through the school district to get a different PT. We have our transistion meeting in one week and hopefully we will have the IEP shortly after that. D and T Kruempel wrote: Our son receives PT through the school district and they have been working on his balance and coordination. For example: standing on one foot, jumping over a rope or line with both feet together, stretching and strengthening both lower and upper muscles, working on walking up and down stairs without bouncing off the walls, etc. His body is stiff and and we are also working on him to relax his muscles (not to be so tight). We have seen a lot of improvement with his balance. He also sees a OT for fine motor delay and another OT therapist for Sensory Integration therapy. We are meeting next week to request that they start meeting with Jake twice a week instead of once per the suggestion of his neurologist. Hope that helps. Tracie Mom to Jake, 6 years gabeandevansmom wrote: For those of you who have children who are walking without an assistive device such as a walker etc. I am wondering what type of activities your physical therapist does with your child. I am very unhappy with our therapist, literally all she does is follow Evan around while he walks or has him practice the stairs. That is it, I feel there is more she could be doing with him. So I am just wanting to get other parental opinions. Thanks mom to Evan 34 months, L Spastic Hemiplegia, BPP --------------------------------- Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2007 Report Share Posted September 29, 2007 Our son has physical therapy 3 times a week for an hour each session, and OT 2 times a week, with a 3rd time done as a co-treat with PT. Title 19 also provides for home PT and OT... Get your doctors involved in terms of medical justification, and stand firm in your desire for more therapy...they will keep reducing it if you don't stand up for him. ONE TIME A MONTH!!!! Thats ridiculous. and For those of you who have children who are walking without an > assistive device such as a walker etc. I am wondering what type of > activities your physical therapist does with your child. > > I am very unhappy with our therapist, literally all she does is follow > Evan around while he walks or has him practice the stairs. That is it, > I feel there is more she could be doing with him. So I am just wanting > to get other parental opinions. > > Thanks > > mom to Evan 34 months, L Spastic Hemiplegia, BPP > > > > > > --------------------------------- > Be a better Globetrotter. Get better travel answers from someone who knows. > Yahoo! Answers - Check it out. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 From my experience with PT in schools here in AZ and in MA, if it's on the child's IEP to get PT, they generally get 1/2 a week individual, and perhaps extra time in group therapy. When you go for his transition meeting take your list so the therapists there know what your expectations are from the start. Your goals all sound like goals that reasonably could be done in the school setting. --- ich wrote: > When I first wrote this post I was reall y not sure > what else she could be doing and I was looking for > ideas of things that Evan could be working on. Now > that I have read some of the respones these are the > things I would like her to work on: > > Jumping > Trunk control on left side > riding a tricycle > catching or holding with both hands > balance > endurance > > The therapy place that he is in made it clear from > the beginning that they work on getting a child to > walk and to be able to do stairs and curbs, but they > do not work on any refining of the gait etc. The > therapist just did a six month eval and told me that > she is going to recommend cutting his therapy down > to 1x a month. So that means he will basically have > 30 minutes of PT every month. I am in the process of > requesting a new therapy center. He is > transistioning to the school district so that is a > whole different can of worms I am having to deal > with now. > > Thanks for the ideas > > > > Avenenti ston > wrote: > You say you feel there is more the PT > could be doing > with your child, do you have anything in particular > in > mind? Have you discussed this with her? > It could also be that your son has plateaued and may > need a break from PT. As a Developmental > Specialist/Support Coordinator in an Early > Intervention program I have seen both sides of the > picture. When parents have voiced concern about > their > child's program, I first ask them what they want to > see happening, then give them suggestions for > addressing their concerns with the therapists. But > sometimes children hit a plateau of progress, so the > team (parent, therapist and me, as Support > Coordinator) decide if a break is needed or maybe > backing off the number of visits. This time off > gives > us a better picture of what's needed. Some kids > continue to progress on their own. For others it > becomes more obvious what skills need more work, or > if > there are " interferring " factors, such as sensory > integration issues that need to be addressed. I also > remind parents that just because our program will > pay > for services, not all kids need all services - some > kids get overwhelmed by too much " work " , and others > will make progress by the parents " training " the > kids > following training from the developmental specialist > or consultation from specific therapists. One of our > goals in our EI program is to empower the parents to > take the lead for their kids, whether it's > advocating > for what they need or asking to be taught how to " do > the 'therapies' " with their kids themselves, too so > they can incorporate the teaching into everyday > situations. > Also, I run into families who get upset because the > therapists " are just playing with the kid " . Remember > though, kids need to be kids - even those with > special > needs - and kids learn best through play. I've seen > speech therapists using singing to teach speech, > physical therapists playing catch to teach balance > and > motor planning, occupational therapists using > playdough activities to build hand strength and fine > motor control. As a developmental therapist, I help > parents incorporate ideas from therapists into > everyday situations as well as playing games and > other > activities to help build cognitive skills in the > children. > For the most part, the therapists I work with are > very > open to parents' questions, concerns and > suggestions. > So, step up and speak to your PT directly about your > concerns. If she doesn't respond well take it up > with > your service/support coordinator. > > > --- gabeandevansmom > wrote: > > > For those of you who have children who are walking > > without an > > assistive device such as a walker etc. I am > > wondering what type of > > activities your physical therapist does with your > > child. > > > > I am very unhappy with our therapist, literally > all > > she does is follow > > Evan around while he walks or has him practice the > > stairs. That is it, > > I feel there is more she could be doing with him. > So > > I am just wanting > > to get other parental opinions. > > > > Thanks > > > > mom to Evan 34 months, L Spastic Hemiplegia, > > BPP > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 And keep in mind that if your school program is limited in the educational setting to provide PT, contact your insurance or title 19...because they will also pay for home therapy. At one point we were doing aqua therapy and home therapy once a week, in addition to school... Home PT is great, because if you have other kids, like we do, they do it in a home setting...involving the other children...teaching/coaching in play activities and stretch that is also fun... We have a fabulous PT... better than our school PT...although she is great too. Title 19 pays for all of it... 56 hours of in home private nursing, one full hour of PT a week, and soon OT...once alone, and once to co-treat. I look at home PT as an educational and helpful resource for us as parents and siblings, because we do not get to see all that he does during the day. I also just found out that title 19 through Beckett Waiver is also going to pay for the track lifts at 100%. What a relief...and the new bed too!!!! Thank you God!!! Physical Therapy is only as effective as you are also learning and applying techniques...as much as you can... Repitition of activities etc. Cheers... , Mom to age ALMOST 10... diffuse bilateral PMG 80% affected, non verbal, wheelchair, extreme aspiration risks, seizures, reflux, G tube fed exclusively, and prone to giggling himself into fits of hysterical laughter. Avenenti ston wrote: From my experience with PT in schools here in AZ and in MA, if it's on the child's IEP to get PT, they generally get 1/2 a week individual, and perhaps extra time in group therapy. When you go for his transition meeting take your list so the therapists there know what your expectations are from the start. Your goals all sound like goals that reasonably could be done in the school setting. --- ich wrote: > When I first wrote this post I was reall y not sure > what else she could be doing and I was looking for > ideas of things that Evan could be working on. Now > that I have read some of the respones these are the > things I would like her to work on: > > Jumping > Trunk control on left side > riding a tricycle > catching or holding with both hands > balance > endurance > > The therapy place that he is in made it clear from > the beginning that they work on getting a child to > walk and to be able to do stairs and curbs, but they > do not work on any refining of the gait etc. The > therapist just did a six month eval and told me that > she is going to recommend cutting his therapy down > to 1x a month. So that means he will basically have > 30 minutes of PT every month. I am in the process of > requesting a new therapy center. He is > transistioning to the school district so that is a > whole different can of worms I am having to deal > with now. > > Thanks for the ideas > > > > Avenenti ston > wrote: > You say you feel there is more the PT > could be doing > with your child, do you have anything in particular > in > mind? Have you discussed this with her? > It could also be that your son has plateaued and may > need a break from PT. As a Developmental > Specialist/Support Coordinator in an Early > Intervention program I have seen both sides of the > picture. When parents have voiced concern about > their > child's program, I first ask them what they want to > see happening, then give them suggestions for > addressing their concerns with the therapists. But > sometimes children hit a plateau of progress, so the > team (parent, therapist and me, as Support > Coordinator) decide if a break is needed or maybe > backing off the number of visits. This time off > gives > us a better picture of what's needed. Some kids > continue to progress on their own. For others it > becomes more obvious what skills need more work, or > if > there are " interferring " factors, such as sensory > integration issues that need to be addressed. I also > remind parents that just because our program will > pay > for services, not all kids need all services - some > kids get overwhelmed by too much " work " , and others > will make progress by the parents " training " the > kids > following training from the developmental specialist > or consultation from specific therapists. One of our > goals in our EI program is to empower the parents to > take the lead for their kids, whether it's > advocating > for what they need or asking to be taught how to " do > the 'therapies' " with their kids themselves, too so > they can incorporate the teaching into everyday > situations. > Also, I run into families who get upset because the > therapists " are just playing with the kid " . Remember > though, kids need to be kids - even those with > special > needs - and kids learn best through play. I've seen > speech therapists using singing to teach speech, > physical therapists playing catch to teach balance > and > motor planning, occupational therapists using > playdough activities to build hand strength and fine > motor control. As a developmental therapist, I help > parents incorporate ideas from therapists into > everyday situations as well as playing games and > other > activities to help build cognitive skills in the > children. > For the most part, the therapists I work with are > very > open to parents' questions, concerns and > suggestions. > So, step up and speak to your PT directly about your > concerns. If she doesn't respond well take it up > with > your service/support coordinator. > > > --- gabeandevansmom > wrote: > > > For those of you who have children who are walking > > without an > > assistive device such as a walker etc. I am > > wondering what type of > > activities your physical therapist does with your > > child. > > > > I am very unhappy with our therapist, literally > all > > she does is follow > > Evan around while he walks or has him practice the > > stairs. That is it, > > I feel there is more she could be doing with him. > So > > I am just wanting > > to get other parental opinions. > > > > Thanks > > > > mom to Evan 34 months, L Spastic Hemiplegia, > > BPP > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 I just called a local therapy center here, and they were supposed to get back to me today or tomorrow as to whether Evan can start with them or if he will maybe need a referral, I do not know. We are also going to the CCS clinic to have our appt tomorrow so I am going to let them know that I object to his being cut back, but I am really looking for a way to leave this center so hopefully I can get an alternative option. Also, the school district is going to pay for adaptive PE so that will be a type of PT that he is getting. JULIE HASSELBERGER wrote: And keep in mind that if your school program is limited in the educational setting to provide PT, contact your insurance or title 19...because they will also pay for home therapy. At one point we were doing aqua therapy and home therapy once a week, in addition to school... Home PT is great, because if you have other kids, like we do, they do it in a home setting...involving the other children...teaching/coaching in play activities and stretch that is also fun... We have a fabulous PT... better than our school PT...although she is great too. Title 19 pays for all of it... 56 hours of in home private nursing, one full hour of PT a week, and soon OT...once alone, and once to co-treat. I look at home PT as an educational and helpful resource for us as parents and siblings, because we do not get to see all that he does during the day. I also just found out that title 19 through Beckett Waiver is also going to pay for the track lifts at 100%. What a relief...and the new bed too!!!! Thank you God!!! Physical Therapy is only as effective as you are also learning and applying techniques...as much as you can... Repitition of activities etc. Cheers... , Mom to age ALMOST 10... diffuse bilateral PMG 80% affected, non verbal, wheelchair, extreme aspiration risks, seizures, reflux, G tube fed exclusively, and prone to giggling himself into fits of hysterical laughter. Avenenti ston wrote: From my experience with PT in schools here in AZ and in MA, if it's on the child's IEP to get PT, they generally get 1/2 a week individual, and perhaps extra time in group therapy. When you go for his transition meeting take your list so the therapists there know what your expectations are from the start. Your goals all sound like goals that reasonably could be done in the school setting. --- ich wrote: > When I first wrote this post I was reall y not sure > what else she could be doing and I was looking for > ideas of things that Evan could be working on. Now > that I have read some of the respones these are the > things I would like her to work on: > > Jumping > Trunk control on left side > riding a tricycle > catching or holding with both hands > balance > endurance > > The therapy place that he is in made it clear from > the beginning that they work on getting a child to > walk and to be able to do stairs and curbs, but they > do not work on any refining of the gait etc. The > therapist just did a six month eval and told me that > she is going to recommend cutting his therapy down > to 1x a month. So that means he will basically have > 30 minutes of PT every month. I am in the process of > requesting a new therapy center. He is > transistioning to the school district so that is a > whole different can of worms I am having to deal > with now. > > Thanks for the ideas > > > > Avenenti ston > wrote: > You say you feel there is more the PT > could be doing > with your child, do you have anything in particular > in > mind? Have you discussed this with her? > It could also be that your son has plateaued and may > need a break from PT. As a Developmental > Specialist/Support Coordinator in an Early > Intervention program I have seen both sides of the > picture. When parents have voiced concern about > their > child's program, I first ask them what they want to > see happening, then give them suggestions for > addressing their concerns with the therapists. But > sometimes children hit a plateau of progress, so the > team (parent, therapist and me, as Support > Coordinator) decide if a break is needed or maybe > backing off the number of visits. This time off > gives > us a better picture of what's needed. Some kids > continue to progress on their own. For others it > becomes more obvious what skills need more work, or > if > there are " interferring " factors, such as sensory > integration issues that need to be addressed. I also > remind parents that just because our program will > pay > for services, not all kids need all services - some > kids get overwhelmed by too much " work " , and others > will make progress by the parents " training " the > kids > following training from the developmental specialist > or consultation from specific therapists. One of our > goals in our EI program is to empower the parents to > take the lead for their kids, whether it's > advocating > for what they need or asking to be taught how to " do > the 'therapies' " with their kids themselves, too so > they can incorporate the teaching into everyday > situations. > Also, I run into families who get upset because the > therapists " are just playing with the kid " . Remember > though, kids need to be kids - even those with > special > needs - and kids learn best through play. I've seen > speech therapists using singing to teach speech, > physical therapists playing catch to teach balance > and > motor planning, occupational therapists using > playdough activities to build hand strength and fine > motor control. As a developmental therapist, I help > parents incorporate ideas from therapists into > everyday situations as well as playing games and > other > activities to help build cognitive skills in the > children. > For the most part, the therapists I work with are > very > open to parents' questions, concerns and > suggestions. > So, step up and speak to your PT directly about your > concerns. If she doesn't respond well take it up > with > your service/support coordinator. > > > --- gabeandevansmom > wrote: > > > For those of you who have children who are walking > > without an > > assistive device such as a walker etc. I am > > wondering what type of > > activities your physical therapist does with your > > child. > > > > I am very unhappy with our therapist, literally > all > > she does is follow > > Evan around while he walks or has him practice the > > stairs. That is it, > > I feel there is more she could be doing with him. > So > > I am just wanting > > to get other parental opinions. > > > > Thanks > > > > mom to Evan 34 months, L Spastic Hemiplegia, > > BPP > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 Just beware, Title 19 doesn't cover everything the same from kid to kid. It's all based on medical necessity and will only cover home therapies if it's not a duplication of services from school that is already meeting the recommended amount of therapy. For example, if the doctor (the child's PCP will need to write a prescription for the needed services) is recommending 1 hour a week of PT and the school provides 1/2 a day of PT, then Title 19 will most likely deny your request for additional PT. Same goes for speech and occupational therapies. Unless the doctor is recommending a specialized version of the therapy that the school isn't providing. For example, if your child needs oral-motor therapy, that's being provided by an occupational therapist, to address feeding issues, this would probably be approved for additional, home-based, therapy, since most school OT's and Speech therapists don't have the training, nor the time, to do this kind of therapy at school. Also the type, and amount, of respite Title 19 approves is based on medical necessity and family needs. I've worked with families who have been disappointed, because they thought once their child got Title 19 they'd be automatically approved for all these " extras " because their friend's kids were getting a bunch of services, only to find out it's a bit more complicated than that - it's based on the child's medical needs and the child's Individual Service Plan outcomes/goals. Early Interventionist --- ich wrote: > I just called a local therapy center here, and they > were supposed to get back to me today or tomorrow as > to whether Evan can start with them or if he will > maybe need a referral, I do not know. We are also > going to the CCS clinic to have our appt tomorrow so > I am going to let them know that I object to his > being cut back, but I am really looking for a way to > leave this center so hopefully I can get an > alternative option. > > Also, the school district is going to pay for > adaptive PE so that will be a type of PT that he is > getting. > > > JULIE HASSELBERGER wrote: > And keep in mind that if your school > program is limited in the educational setting to > provide PT, contact your insurance or title > 19...because they will also pay for home therapy. At > one point we were doing aqua therapy and home > therapy once a week, in addition to school... Home > PT is great, because if you have other kids, like we > do, they do it in a home setting...involving the > other children...teaching/coaching in play > activities and stretch that is also fun... We have a > fabulous PT... better than our school PT...although > she is great too. > > Title 19 pays for all of it... 56 hours of in home > private nursing, one full hour of PT a week, and > soon OT...once alone, and once to co-treat. > > I look at home PT as an educational and helpful > resource for us as parents and siblings, because we > do not get to see all that he does during the day. > > I also just found out that title 19 through > Beckett Waiver is also going to pay for the track > lifts at 100%. What a relief...and the new bed > too!!!! > > Thank you God!!! > > Physical Therapy is only as effective as you are > also learning and applying techniques...as much as > you can... Repitition of activities etc. > > Cheers... > , Mom to age ALMOST 10... diffuse > bilateral PMG 80% affected, non verbal, wheelchair, > extreme aspiration risks, seizures, reflux, G tube > fed exclusively, and prone to giggling himself into > fits of hysterical laughter. > > Avenenti ston > wrote: > From my experience with PT in schools here in AZ and > in MA, if it's on the child's IEP to get PT, they > generally get 1/2 a week individual, and perhaps > extra > time in group therapy. When you go for his > transition > meeting take your list so the therapists there know > what your expectations are from the start. Your > goals > all sound like goals that reasonably could be done > in > the school setting. > > > --- ich > wrote: > > > When I first wrote this post I was reall y not > sure > > what else she could be doing and I was looking for > > ideas of things that Evan could be working on. Now > > that I have read some of the respones these are > the > > things I would like her to work on: > > > > Jumping > > Trunk control on left side > > riding a tricycle > > catching or holding with both hands > > balance > > endurance > > > > The therapy place that he is in made it clear from > > the beginning that they work on getting a child to > > walk and to be able to do stairs and curbs, but > they > > do not work on any refining of the gait etc. The > > therapist just did a six month eval and told me > that > > she is going to recommend cutting his therapy down > > to 1x a month. So that means he will basically > have > > 30 minutes of PT every month. I am in the process > of > > requesting a new therapy center. He is > > transistioning to the school district so that is a > > whole different can of worms I am having to deal > > with now. > > > > Thanks for the ideas > > > > > > > > Avenenti ston > > wrote: > > You say you feel there is more the PT > > could be doing > > with your child, do you have anything in > particular > > in > > mind? Have you discussed this with her? > > It could also be that your son has plateaued and > may > > need a break from PT. As a Developmental > > Specialist/Support Coordinator in an Early > > Intervention program I have seen both sides of the > > picture. When parents have voiced concern about > > their > > child's program, I first ask them what they want > to > > see happening, then give them suggestions for > > addressing their concerns with the therapists. But > > sometimes children hit a plateau of progress, so > the > > team (parent, therapist and me, as Support > > Coordinator) decide if a break is needed or maybe > > backing off the number of visits. This time off > > gives > > us a better picture of what's needed. Some kids > > continue to progress on their own. For others it > > becomes more obvious what skills need more work, > or > > if > > there are " interferring " factors, such as sensory > > integration issues that need to be addressed. I > also > > remind parents that just because our program will > > pay > > for services, not all kids need all services - > some > > kids get overwhelmed by too much " work " , and > others > > will make progress by the parents " training " the > > kids > > following training from the developmental > specialist > > or consultation from specific therapists. One of > our > > goals in our EI program is to empower the parents > to > > take the lead for their kids, whether it's > > advocating > > for what they need or asking to be taught how to > " do > > the 'therapies' " with their kids themselves, too > so > > they can incorporate the teaching into everyday > > situations. > > Also, I run into families who get upset because > the > > therapists " are just playing with the kid " . > Remember > > though, kids need to be kids - even those with > > special > > needs - and kids learn best through play. I've > seen > > speech therapists using singing to teach speech, > > physical therapists playing catch to teach balance > > and > > motor planning, occupational therapists using > > playdough activities to build hand strength and > fine > > motor control. As a developmental therapist, I > help > > parents incorporate ideas from therapists into > > everyday situations as well as playing games and > > other > > activities to help build cognitive skills in the > > children. > > For the most part, the therapists I work with are > > very > > open to parents' questions, concerns and > > suggestions. > > So, step up and speak to your PT directly about > your > > concerns. If she doesn't respond well take it up > > with > > your service/support coordinator. > > > > > > --- gabeandevansmom > > wrote: > > > > > For those of you who have children who are > walking > === message truncated === ________________________________________________________________________________\ ____ Need a vacation? Get great deals to amazing places on Yahoo! Travel. http://travel.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2007 Report Share Posted October 10, 2007 We had our eval with the local therapy center and she gave me some great tips on how to get the school district to pay for physical therapy. She said to say: I am concerned about his safety on the playground (very much so) Keeping up with peers (definitley a concern that needs to be addressed) So I am going to ask for a PT evaluation and hopefully he can get PT once a week at the school. We have the IEP on the 19th of October so I hope it all goes well. Avenenti ston wrote: Just beware, Title 19 doesn't cover everything the same from kid to kid. It's all based on medical necessity and will only cover home therapies if it's not a duplication of services from school that is already meeting the recommended amount of therapy. For example, if the doctor (the child's PCP will need to write a prescription for the needed services) is recommending 1 hour a week of PT and the school provides 1/2 a day of PT, then Title 19 will most likely deny your request for additional PT. Same goes for speech and occupational therapies. Unless the doctor is recommending a specialized version of the therapy that the school isn't providing. For example, if your child needs oral-motor therapy, that's being provided by an occupational therapist, to address feeding issues, this would probably be approved for additional, home-based, therapy, since most school OT's and Speech therapists don't have the training, nor the time, to do this kind of therapy at school. Also the type, and amount, of respite Title 19 approves is based on medical necessity and family needs. I've worked with families who have been disappointed, because they thought once their child got Title 19 they'd be automatically approved for all these " extras " because their friend's kids were getting a bunch of services, only to find out it's a bit more complicated than that - it's based on the child's medical needs and the child's Individual Service Plan outcomes/goals. Early Interventionist --- ich wrote: > I just called a local therapy center here, and they > were supposed to get back to me today or tomorrow as > to whether Evan can start with them or if he will > maybe need a referral, I do not know. We are also > going to the CCS clinic to have our appt tomorrow so > I am going to let them know that I object to his > being cut back, but I am really looking for a way to > leave this center so hopefully I can get an > alternative option. > > Also, the school district is going to pay for > adaptive PE so that will be a type of PT that he is > getting. > > > JULIE HASSELBERGER wrote: > And keep in mind that if your school > program is limited in the educational setting to > provide PT, contact your insurance or title > 19...because they will also pay for home therapy. At > one point we were doing aqua therapy and home > therapy once a week, in addition to school... Home > PT is great, because if you have other kids, like we > do, they do it in a home setting...involving the > other children...teaching/coaching in play > activities and stretch that is also fun... We have a > fabulous PT... better than our school PT...although > she is great too. > > Title 19 pays for all of it... 56 hours of in home > private nursing, one full hour of PT a week, and > soon OT...once alone, and once to co-treat. > > I look at home PT as an educational and helpful > resource for us as parents and siblings, because we > do not get to see all that he does during the day. > > I also just found out that title 19 through > Beckett Waiver is also going to pay for the track > lifts at 100%. What a relief...and the new bed > too!!!! > > Thank you God!!! > > Physical Therapy is only as effective as you are > also learning and applying techniques...as much as > you can... Repitition of activities etc. > > Cheers... > , Mom to age ALMOST 10... diffuse > bilateral PMG 80% affected, non verbal, wheelchair, > extreme aspiration risks, seizures, reflux, G tube > fed exclusively, and prone to giggling himself into > fits of hysterical laughter. > > Avenenti ston > wrote: > From my experience with PT in schools here in AZ and > in MA, if it's on the child's IEP to get PT, they > generally get 1/2 a week individual, and perhaps > extra > time in group therapy. When you go for his > transition > meeting take your list so the therapists there know > what your expectations are from the start. Your > goals > all sound like goals that reasonably could be done > in > the school setting. > > > --- ich > wrote: > > > When I first wrote this post I was reall y not > sure > > what else she could be doing and I was looking for > > ideas of things that Evan could be working on. Now > > that I have read some of the respones these are > the > > things I would like her to work on: > > > > Jumping > > Trunk control on left side > > riding a tricycle > > catching or holding with both hands > > balance > > endurance > > > > The therapy place that he is in made it clear from > > the beginning that they work on getting a child to > > walk and to be able to do stairs and curbs, but > they > > do not work on any refining of the gait etc. The > > therapist just did a six month eval and told me > that > > she is going to recommend cutting his therapy down > > to 1x a month. So that means he will basically > have > > 30 minutes of PT every month. I am in the process > of > > requesting a new therapy center. He is > > transistioning to the school district so that is a > > whole different can of worms I am having to deal > > with now. > > > > Thanks for the ideas > > > > > > > > Avenenti ston > > wrote: > > You say you feel there is more the PT > > could be doing > > with your child, do you have anything in > particular > > in > > mind? Have you discussed this with her? > > It could also be that your son has plateaued and > may > > need a break from PT. As a Developmental > > Specialist/Support Coordinator in an Early > > Intervention program I have seen both sides of the > > picture. When parents have voiced concern about > > their > > child's program, I first ask them what they want > to > > see happening, then give them suggestions for > > addressing their concerns with the therapists. But > > sometimes children hit a plateau of progress, so > the > > team (parent, therapist and me, as Support > > Coordinator) decide if a break is needed or maybe > > backing off the number of visits. This time off > > gives > > us a better picture of what's needed. Some kids > > continue to progress on their own. For others it > > becomes more obvious what skills need more work, > or > > if > > there are " interferring " factors, such as sensory > > integration issues that need to be addressed. I > also > > remind parents that just because our program will > > pay > > for services, not all kids need all services - > some > > kids get overwhelmed by too much " work " , and > others > > will make progress by the parents " training " the > > kids > > following training from the developmental > specialist > > or consultation from specific therapists. One of > our > > goals in our EI program is to empower the parents > to > > take the lead for their kids, whether it's > > advocating > > for what they need or asking to be taught how to > " do > > the 'therapies' " with their kids themselves, too > so > > they can incorporate the teaching into everyday > > situations. > > Also, I run into families who get upset because > the > > therapists " are just playing with the kid " . > Remember > > though, kids need to be kids - even those with > > special > > needs - and kids learn best through play. I've > seen > > speech therapists using singing to teach speech, > > physical therapists playing catch to teach balance > > and > > motor planning, occupational therapists using > > playdough activities to build hand strength and > fine > > motor control. As a developmental therapist, I > help > > parents incorporate ideas from therapists into > > everyday situations as well as playing games and > > other > > activities to help build cognitive skills in the > > children. > > For the most part, the therapists I work with are > > very > > open to parents' questions, concerns and > > suggestions. > > So, step up and speak to your PT directly about > your > > concerns. If she doesn't respond well take it up > > with > > your service/support coordinator. > > > > > > --- gabeandevansmom > > wrote: > > > > > For those of you who have children who are > walking > === message truncated === __________________________________________________________ Need a vacation? Get great deals to amazing places on Yahoo! Travel. http://travel.yahoo.com/ Mom 2 Evan Spastic Hemiplegia Left 19 months, 5 nda and SM to 14 --------------------------------- Pinpoint customers who are looking for what you sell. 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Guest guest Posted October 11, 2007 Report Share Posted October 11, 2007 I'm also an Early Interventionist. I have one child (18 months old) on my caseload with PMG. Mom doesn't have internet access so I'm reading and sharing info with her and will post questions too. Remember too that you are not required to provide your child's Medicaid number to the school district for your child's services. You simply write decline to provide on the form they give you. If you have already given the schools the number, you can write a letter stating that effective this date, you are withdrawing your child's Medicaid number from his file for any future billing. This will stop the perceived " double-dipping " for services (i.e., PT at school and in private clinic). Shelli Quenga Quote Link to comment Share on other sites More sharing options...
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