Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 Eloisa, I remember my daughter always crying with a prone stander. I didn't believe it was right to continue when it was so obviously uncomfortable. We didn't continue with that particular therapy, and she walked at about 3.5 years. I think these can be difficult decisions because sometimes we need to persist even though we know the child doesn't like it or the progress could be delayed. Do you know what they are doing at the time she cries? Do you think it is something that will help her development? If she is crying for mom because she doesn't like separation, that is a tough one. Sure, kids need to learn to be with others, but does it need to be at this particular time and age? Maybe so depending on the circumstances, but maybe not, as well. ot pt Hi everyone I seem to be needing lots of guidance lately, Sierras sees a therapist for occupational therapy and one for phisical therapy both at the hospital this is in addition to her five other teacher, it seems as if every time we go to ot and pt she just hates it crys and wants momma I actually leave the room so she will pay attention somewhat, I always feel horrible when we leave, is it just me or is this common for her to do and should i continue with therapy if she is unhappy is it really helping? what are your thoughts? Sierras is 5 mo. Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. 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 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2003 Report Share Posted August 28, 2003 You'll have to follow your instincts on this. But I do want to share that Aubrie also hated PT and OT as an infant. They did things she didn't like and she'd cry and fuss. I also had to leave the room and agonized over whether I should continue or not. But I did because the therapists assured me that it was things she needed to do. I recall one time the PT talking me through and explaining how Aubrie would cry and fuss but not really resist her physically. But it was things she had to do -- like be on her belly or try to support herself on her shoulders. She hated it. But it was necessary for her to do it anyway. Like now, she complains as if it hurts to have her nails clipped and her hair washed. Well, I know it's not really harming her even if it is an unpleasant sensation for her. They are necessities of life that she has to endure. It's not fun when our babies have to do things they don't like. What a nasty lesson to learn as an infant. However, sometimes it's necessary. But only you can tell if the therapy is being done in a respectful way that should be continued despite Sierra's complaints. I know it's agonizing. You'll figure it out. Michele W Aubrie's mom ot pt Hi everyone I seem to be needing lots of guidance lately, Sierras sees a therapist for occupational therapy and one for phisical therapy both at the hospital this is in addition to her five other teacher, it seems as if every time we go to ot and pt she just hates it crys and wants momma I actually leave the room so she will pay attention somewhat, I always feel horrible when we leave, is it just me or is this common for her to do and should i continue with therapy if she is unhappy is it really helping? what are your thoughts? Sierras is 5 mo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2003 Report Share Posted August 30, 2003 Couldn't agree more with . If and when you have stayed in the room, have you been happy with the approach taken? Have the therapists explained why they are doing what they are doing for Sierra? Has this been satisfactory? is generally an easy going child but at age 3, she still objects to what physios and OTs do with her. We have had to intervene on one or two occassions when we have questioned whether it is essential for her to eg lie on her stomach when she clearly hates it and it effectively renders her blind in view of her field of vision and she has resisted it for 3 years. All therapists gave up on that one as she has now taken to bunny-hopping and this will build her up anyway. The physio has now changed her approach and has had much more co-operation and has suddenly really progressed. I think this could only happen at this stage though, Sierra is probably too young for therapy to be her-led. I do think, however, that any therapy which induces excessive distress should be evaluated to explore other means of achieving the same end/goal. ,s therapies are essential and there are times when she has to follow them and she does resist them, but in due course, she mostly comes round. Hydotherapy used to be a no-no, now she loves it! As says, only you can be the judge. Question though, is it the therapies or the setting? has also decided that anything done in hospital can only be bad! Good luck Flo > >Reply-To: CHARGE >To: CHARGE >Subject: ot pt >Date: Thu, 28 Aug 2003 02:13:14 -0000 > >Hi everyone I seem to be needing lots of guidance lately, Sierras >sees a therapist for occupational therapy and one for phisical >therapy both at the hospital this is in addition to her five other >teacher, it seems as if every time we go to ot and pt she just hates >it crys and wants momma I actually leave the room so she will pay >attention somewhat, I always feel horrible when we leave, is it just >me or is this common for her to do and should i continue with therapy >if she is unhappy is it really helping? what are your thoughts? >Sierras is 5 mo. > _________________________________________________________________ Sign-up for a FREE BT Broadband connection today! http://www.msn.co.uk/specials/btbroadband Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2003 Report Share Posted September 3, 2003 Hi Eloisa, Penina objected to many things in her early days (she still squawks when she doesn't like something that's happening!). Although she was not really tactile defensive, our OT started a sensory integration program (brushing, spinning, etc.). Penina was not thrilled. But as the pediatric psychologist we were working with at the time (long story - I'll repeat it another time) told us, it wouldn't help Penina if we caved into her manipulative behaviour (huh? she was just a BABY!). She NEEDS the therapies. Removing her from the situation just because she is fussing is not helpiong Penina in the long run, he insisted. He told me very firmly to toughen up - it's not about MY emotions any more (grief, guilt etc.). If Penina is not in any PHYSICAL discomfort, he said, let her cry - she'll stop and move forward. (and she did). Surprise, Penina was fine and eventually learned to be (mostly) cooperative with the various adults pushing and pulling at her. It also helped that we put her in lots of baby and toddler mom-and-tot activities from the age of 4 months. She also learned that grownups can be fun, too :-) She was on a school van for 2 - 3 hours daily at the tender age of 3 and 4 to attend a special nursery program that also fostered independence. She was just fine, and benefitted way more from the stimulation of riding with several kids of different ages than she would have had I kept her in a more limited environment. All this to say that Penina is not the marshmallow her mother is! She is robust and strong and capable and independant. 99.999% is just her personality, but maybe getting used to all the therapies and activities at a young age helped too. Stick with it. best regards, Anne, mom of Penina (CHARGE, 7) sierraeloisa wrote: > Hi everyone I seem to be needing lots of guidance lately, Sierras > sees a therapist for occupational therapy and one for phisical > therapy both at the hospital this is in addition to her five other > teacher, it seems as if every time we go to ot and pt she just hates > it crys and wants momma I actually leave the room so she will pay > attention somewhat, I always feel horrible when we leave, is it just > me or is this common for her to do and should i continue with therapy > if she is unhappy is it really helping? what are your thoughts? > Sierras is 5 mo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2003 Report Share Posted September 3, 2003 Dylan had no known structural abnormalities and he rarely cried for anything, but every time I lifted his arm to put his t-shirt on, or the therapist did activities putting his arm over his head, he cried and to me it said pain. It was very different than the protest of I am doing something new that does not feel secure to me. Turns out it was from a very bad torticolis (very tight neck) from not moving in utero. It continues to impact him and was a big deal when he crawled, because his arm would suddenly give way even though he had the motion of crawling down. Kim Mom to Dylan 7 CHaRGE, Kayla 12, Tyler 15 > Hi Eloisa, > > Penina objected to many things in her early days (she still squawks > when she doesn't like something that's happening!). Although she was > not really tactile defensive, our OT started a sensory integration > program (brushing, spinning, etc.). Penina was not thrilled. > > But as the pediatric psychologist we were working with at the time (long > story - I'll repeat it another time) told us, it wouldn't help Penina if > we caved into her manipulative behaviour (huh? she was just a BABY!). > She NEEDS the therapies. Removing her from the situation just because > she is fussing is not helpiong Penina in the long run, he insisted. He > told me very firmly to toughen up - it's not about MY emotions any more > (grief, guilt etc.). If Penina is not in any PHYSICAL discomfort, he > said, let her cry - she'll stop and move forward. (and she did). > > Surprise, Penina was fine and eventually learned to be (mostly) > cooperative with the various adults pushing and pulling at her. > > It also helped that we put her in lots of baby and toddler mom-and-tot > activities from the age of 4 months. She also learned that grownups can > be fun, too :-) > > She was on a school van for 2 - 3 hours daily at the tender age of 3 and > 4 to attend a special nursery program that also fostered independence. > She was just fine, and benefitted way more from the stimulation of > riding with several kids of different ages than she would have had I > kept her in a more limited environment. > > All this to say that Penina is not the marshmallow her mother is! She is > robust and strong and capable and independant. 99.999% is just her > personality, but maybe getting used to all the therapies and activities > at a young age helped too. > > Stick with it. > > best regards, > > Anne, mom of Penina (CHARGE, 7) > > > > > > > > sierraeloisa wrote: > >> > Hi everyone I seem to be needing lots of guidance lately, Sierras >> > sees a therapist for occupational therapy and one for phisical >> > therapy both at the hospital this is in addition to her five other >> > teacher, it seems as if every time we go to ot and pt she just hates >> > it crys and wants momma I actually leave the room so she will pay >> > attention somewhat, I always feel horrible when we leave, is it just >> > me or is this common for her to do and should i continue with therapy >> > if she is unhappy is it really helping? what are your thoughts? >> > Sierras is 5 mo. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2003 Report Share Posted September 3, 2003 Anne said: " All this to say that Penina is not the marshmallow her mother is! She is robust and strong and capable and independant. 99.999% is just her personality, but maybe getting used to all the therapies and activities at a young age helped too. " Anne- First of all, you are no marshmallow!! But I must agree that all of the early intervention and experiences (good and bad) certainly seem to shape our kids' personalities. Aubrie is different from her peers in many ways. Some of them are " CHARGE " things, some seem to be personality, but some seem to be contributable to the early experiences she's had which were so different from what a typical child would have had. It's fascinating to see how a human being develops. I guess since she is developing differently than what I expected, I notice every little thing. Plus many things are happening sort of in slow motion. I am amazed by her every day. Part of it is not just awe at what she can accomplish, but also fascination at how all of the things work that come together to shape us. Michele W Aubrie's mom (5 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2003 Report Share Posted September 4, 2003 Michele, Well said :-) Penina is definitely affected (influenced) by her experiences. It is fascinating to watch Penina grow and change. The other day she had a wide stance, bent her knees a tiny bit and touched the ground to pick a buttercup. It was such an awkward position that I was amazed that she didn't fall down! But she managed, as she always does. (thanks for the affirmation that I am not a marshmallow! I wonder sometimes.... ) Best, Anne, mom of Penina (CHARGE, 7) Michele Westmaas wrote: > Anne said: " All this to say that Penina is not the marshmallow her > mother is! She is > robust and strong and capable and independant. 99.999% is just her > personality, but maybe getting used to all the therapies and activities > at a young age helped too. " > > Anne- > First of all, you are no marshmallow!! But I must agree that all of > the early intervention and experiences (good and bad) certainly seem > to shape our kids' personalities. Aubrie is different from her peers > in many ways. Some of them are " CHARGE " things, some seem to be > personality, but some seem to be contributable to the early > experiences she's had which were so different from what a typical > child would have had. It's fascinating to see how a human being > develops. I guess since she is developing differently than what I > expected, I notice every little thing. Plus many things are happening > sort of in slow motion. I am amazed by her every day. Part of it is > not just awe at what she can accomplish, but also fascination at how > all of the things work that come together to shape us. > > Michele W > Aubrie's mom (5 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2003 Report Share Posted September 4, 2003 We just wanted to share with everyone the news that Whitney will be able to come home for the first time next week! She will be coming home with her G-tube feedings and out patient OT working on nipple feeding. Have any of you experienced a type of therapy called VitalStim? It's some type of electronic stimulation to the throat to help babies learn to swallow. It's something new that is coming to our Children's hospital in orange county, probably in a month. The OT that I spoke with is the one heading this therapy, and she said that there are 5 CHARGEr's waiting to use this therapy. She' just has to get through all of the red tape to get it going. Anyway, I thought it was interesting. Whitney's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2003 Report Share Posted September 4, 2003 We just wanted to share with everyone the news that Whitney will be able to come home for the first time next week! She will be coming home with her G-tube feedings and out patient OT working on nipple feeding. Have any of you experienced a type of therapy called VitalStim? It's some type of electronic stimulation to the throat to help babies learn to swallow. It's something new that is coming to our Children's hospital in orange county, probably in a month. The OT that I spoke with is the one heading this therapy, and she said that there are 5 CHARGEr's waiting to use this therapy. She' just has to get through all of the red tape to get it going. Anyway, I thought it was interesting. Whitney's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2003 Report Share Posted September 4, 2003 great news! enjoy having your little one home!! mom to timmy ChARGE 8, keegan 5.5, liam2.5, wife to pat Re: ot pt > We just wanted to share with everyone the news that Whitney will be able to > come home for the first time next week! She will be coming home with her > G-tube feedings and out patient OT working on nipple feeding. Have any of you > experienced a type of therapy called VitalStim? It's some type of electronic > stimulation to the throat to help babies learn to swallow. It's something new > that is coming to our Children's hospital in orange county, probably in a month. > The OT that I spoke with is the one heading this therapy, and she said that > there are 5 CHARGEr's waiting to use this therapy. She' just has to get > through all of the red tape to get it going. Anyway, I thought it was interesting. > Whitney's Mom > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2003 Report Share Posted September 4, 2003 great news! enjoy having your little one home!! mom to timmy ChARGE 8, keegan 5.5, liam2.5, wife to pat Re: ot pt > We just wanted to share with everyone the news that Whitney will be able to > come home for the first time next week! She will be coming home with her > G-tube feedings and out patient OT working on nipple feeding. Have any of you > experienced a type of therapy called VitalStim? It's some type of electronic > stimulation to the throat to help babies learn to swallow. It's something new > that is coming to our Children's hospital in orange county, probably in a month. > The OT that I spoke with is the one heading this therapy, and she said that > there are 5 CHARGEr's waiting to use this therapy. She' just has to get > through all of the red tape to get it going. Anyway, I thought it was interesting. > Whitney's Mom > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2003 Report Share Posted September 5, 2003 Enjoy her at home ! Lynn Re: ot pt We just wanted to share with everyone the news that Whitney will be able to come home for the first time next week! She will be coming home with her G-tube feedings and out patient OT working on nipple feeding. Have any of you experienced a type of therapy called VitalStim? It's some type of electronic stimulation to the throat to help babies learn to swallow. It's something new that is coming to our Children's hospital in orange county, probably in a month. The OT that I spoke with is the one heading this therapy, and she said that there are 5 CHARGEr's waiting to use this therapy. She' just has to get through all of the red tape to get it going. Anyway, I thought it was interesting. Whitney's Mom Quote Link to comment Share on other sites More sharing options...
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