Guest guest Posted June 17, 2007 Report Share Posted June 17, 2007 I'm not even sure where to begin. I have a 10 soon to be 11 year old daughter who has down syndrome. I have had growing concerns that she also fits somewhere on the autism spectrum scale. She seems to be becoming less social as she gets older. She spends most of her time watch DVD's or videos playing movies and portion of those movies over and over. She has alot of stimming behaviors. She is attached to a little famous freen purse (everyone that knows her knows the green purse) which she uses to stim with by shaking it a certain way. She is very verbal although hard to understand, she gives hugs and will participate in social things if it is of high interest to her. School has been out now for a few weeks and I am having a hard time getting her to leave the house. Today we convinced her to go to a picnic because there was a kiddy waterpark there. Well she went through the water a few times and then for some reason sat down on the picnic bench hung her head, didn't want to talk to anyone, didn't want to move. She sat there for probably at least an hour and after several tries I finally convinced her to leave. Then she was just all off the rest of the day. She has many medical issues so I never know if something could be going on there or which specialist to call this time. Sometimes she'll just lurk, sneak around like a soldier trying to hide from the enemy. She does go through different repetitive behaviors, has lots of sensory issues. Not sure if it's just a huge sensory thing or something more. Any input or suggestions would be great. Thanks, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2007 Report Share Posted June 18, 2007 Vicki: You've come to the right place. We have all been in your shoes. Go with your gut. Have her evaluated by either a Developmental Pediatrician or a Psychologist/Psychiatrist. You can use a form I received at a conference before we had Tori's diagnosed...and boy did it put things into perspective. Liz Help! I'm not even sure where to begin. I have a 10 soon to be 11 year old daughter who has down syndrome. I have had growing concerns that she also fits somewhere on the autism spectrum scale. She seems to be becoming less social as she gets older. She spends most of her time watch DVD's or videos playing movies and portion of those movies over and over. She has alot of stimming behaviors. She is attached to a little famous freen purse (everyone that knows her knows the green purse) which she uses to stim with by shaking it a certain way. She is very verbal although hard to understand, she gives hugs and will participate in social things if it is of high interest to her. School has been out now for a few weeks and I am having a hard time getting her to leave the house. Today we convinced her to go to a picnic because there was a kiddy waterpark there. Well she went through the water a few times and then for some reason sat down on the picnic bench hung her head, didn't want to talk to anyone, didn't want to move. She sat there for probably at least an hour and after several tries I finally convinced her to leave. Then she was just all off the rest of the day. She has many medical issues so I never know if something could be going on there or which specialist to call this time. Sometimes she'll just lurk, sneak around like a soldier trying to hide from the enemy. She does go through different repetitive behaviors, has lots of sensory issues. Not sure if it's just a huge sensory thing or something more. Any input or suggestions would be great. Thanks, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2007 Report Share Posted June 18, 2007 Hi Vicki Please take her to a behavioral specialist. My daughter is 10 soon to be 11 also and she was first diagnoised with down syndrome. She had a lot of similar behaviors and the peds doctor kept telling me that she was ok but she wasn't. I was told that once they have a diagnosis of down syndrome the doctors don't want to look any further but that is only hurting our children. For one thing the earlier the problem is found the better for them. My daughter kept pulling her hair out, hitting herself and crying out for no reason. We got to the point we couldn't leave her to herself for fear that she would really hurt herself. On top of all this she would not sleep and it was sometimes 3 or 4 in the morning when she was finally so exhausted that she fell asleep but we had to get her up at 6 the next morning to go to school. Needless to say I was just as exhausted as she was. I know that no two children are alike when in comes down to the symptoms and there are a lot of behaviors connected with autism so please ask to get her tested as soon as possible. At least if it is not that you can start doing a process of elimination and your mind will be at rest that you have done all you can to help. My daughter also had a lot of medical problems and we practically lived in the doctors office so I don't see why they did not pick up on this. I realized something was wrong and had to take it upon myself to find out what it was and I am so glad I did otherwise my daughter may not be here today. Stay encouraged and may God truly bless you and your family. God has given us strength we didn't know we had. > > I'm not even sure where to begin. I have a 10 soon to be 11 year old > daughter who has down syndrome. I have had growing concerns that she > also fits somewhere on the autism spectrum scale. She seems to be > becoming less social as she gets older. She spends most of her time > watch DVD's or videos playing movies and portion of those movies over > and over. She has alot of stimming behaviors. She is attached to a > little famous freen purse (everyone that knows her knows the green > purse) which she uses to stim with by shaking it a certain way. She > is very verbal although hard to understand, she gives hugs and will > participate in social things if it is of high interest to her. School > has been out now for a few weeks and I am having a hard time getting > her to leave the house. Today we convinced her to go to a picnic > because there was a kiddy waterpark there. Well she went through the > water a few times and then for some reason sat down on the picnic > bench hung her head, didn't want to talk to anyone, didn't want to > move. She sat there for probably at least an hour and after several > tries I finally convinced her to leave. Then she was just all off the > rest of the day. She has many medical issues so I never know if > something could be going on there or which specialist to call this > time. Sometimes she'll just lurk, sneak around like a soldier trying > to hide from the enemy. She does go through different repetitive > behaviors, has lots of sensory issues. Not sure if it's just a huge > sensory thing or something more. Any input or suggestions would be > great. Thanks, Vicki > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 > > Vicki: You've come to the right place. We have all been in your shoes. Go with your gut. Have her evaluated by either a Developmental Pediatrician or a Psychologist/Psychiatrist. You can use a form I received at a conference before we had Tori's diagnosed...and boy did it put things into perspective. > > Liz Hi Liz, I would like to have a copy of the form you've mentioned,please. I second with your suggestion to Vicki on what you had mentioned. A good start then take it from there. I know, I am coming in a little late into this post but hopefully others on the list have asked where does Vicki live? So that a referral could be given. Irma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Thanks to everyone that replied. I am really starting to get overwhelmed with her care and am losing confidence in all the " professionals " . I get my hopes up that someone is really going to figure things out and help me resolve some of the issues and they never seem to. I also can not afford to take her for private evaluations and the pediatricin said they don't make the evaluations. We live in ville FL and have been here just for a couple of years and still don't have any real good contacts for who to turn to. So again if anyone can steer me in the right direction I would really appreciate it. I would also like to know about the form you were talking about Liz. Thanks again, Vicki > >Reply-To: >To: >Subject: Re: Help! >Date: Wed, 20 Jun 2007 16:43:51 -0000 > > > > > > Vicki: You've come to the right place. We have all been in your >shoes. Go with your gut. Have her evaluated by either a >Developmental Pediatrician or a Psychologist/Psychiatrist. You can >use a form I received at a conference before we had Tori's >diagnosed...and boy did it put things into perspective. > > > > Liz > >Hi Liz, > >I would like to have a copy of the form you've mentioned,please. > >I second with your suggestion to Vicki on what you had mentioned. >A good start then take it from there. >I know, I am coming in a little late into this post but hopefully >others on the list have asked where does Vicki live? So that a >referral could be given. > >Irma > > _________________________________________________________________ Don’t miss your chance to WIN $10,000 and other great prizes from Microsoft Office Live http://clk.atdmt.com/MRT/go/aub0540003042mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 HOPE HAVEN is in ville.... Check it out.... Re: Help! >>Date: Wed, 20 Jun 2007 16:43:51 -0000 >> >> >> > >> > Vicki: You've come to the right place. We have all been in your >>shoes. Go with your gut. Have her evaluated by either a >>Developmental Pediatrician or a Psychologist/Psychiatrist. You can >>use a form I received at a conference before we had Tori's >>diagnosed...and boy did it put things into perspective. >> > >> > Liz >> >>Hi Liz, >> >>I would like to have a copy of the form you've mentioned,please. >> >>I second with your suggestion to Vicki on what you had mentioned. >>A good start then take it from there. >>I know, I am coming in a little late into this post but hopefully >>others on the list have asked where does Vicki live? So that a >>referral could be given. >> >>Irma >> >> > > _________________________________________________________________ > Don't miss your chance to WIN $10,000 and other great prizes from > Microsoft > Office Live http://clk.atdmt.com/MRT/go/aub0540003042mrt/direct/01/ > > > > -------------------------------------------------- > Checkout our homepage for information, bookmarks, and photos > of our kids. Share favorite bookmarks, ideas, and other information by > including them. Don't forget, messages are a permanent record of the > archives for our list. http://groups.yahoo.com/group/ > -------------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Vicki: Which form are you referring to? I have sent out so many, just let me know which one and I will get it to you. Liz Re: Help! >>Date: Wed, 20 Jun 2007 16:43:51 -0000 >> >> >> > >> > Vicki: You've come to the right place. We have all been in your >>shoes. Go with your gut. Have her evaluated by either a >>Developmental Pediatrician or a Psychologist/Psychiatrist. You can >>use a form I received at a conference before we had Tori's >>diagnosed...and boy did it put things into perspective. >> > >> > Liz >> >>Hi Liz, >> >>I would like to have a copy of the form you've mentioned,please. >> >>I second with your suggestion to Vicki on what you had mentioned. >>A good start then take it from there. >>I know, I am coming in a little late into this post but hopefully >>others on the list have asked where does Vicki live? So that a >>referral could be given. >> >>Irma >> >> > > _________________________________________________________________ > Don't miss your chance to WIN $10,000 and other great prizes from > Microsoft > Office Live http://clk.atdmt.com/MRT/go/aub0540003042mrt/direct/01/ > > > > -------------------------------------------------- > Checkout our homepage for information, bookmarks, and photos > of our kids. Share favorite bookmarks, ideas, and other information by > including them. Don't forget, messages are a permanent record of the > archives for our list. http://groups.yahoo.com/group/ > -------------------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 I am sorry I don't have any help but I understand your problem so well. I cried this morning on the way to work because my daughter would not cooperate at all to go to school. Would not get dressed, kept sitting down and refusing to move. She is 11 years old and getting big enough that I can't handle her. My husband had to carry her on to the bus and then she tried to get back off. I am at a loss and will eagerly watch for everyone's replies to your e-mail. Just know that I understand even about everyone thinking it is your fault. Carla > Can't begin to tell everyone how helpful this list has been. Like so > many others, I think the best thing has been knowing that others go > through the same trials and tribulations as we do. It is truly > incredible to read your posts and realize the commonalities among our > children, especially when most of the rest of the world seems to be > shaking their heads and making you feel like it's your fault and if only > you'd discipline that child they'd behave. This has been one of the > hardest things for me. Others have the belief that bumpy behaviors can > be " fixed " and it's somehow a lack of parenting skill on my part. > > > > I could really use your help right now. My son Jon is 15 and while > we've struggled to get a dual diagnosis I know he has Aspergers in > addition to the Down Syndrome and ADHD. Right now we're having problems > at school. Jon started off the year with minimal problems but as of > late we're have issues with non compliance, running, sitting down and > refusing to do work. Your basic kinds of meltdown behaviors. We've > been trying to find some trigger for the behavior but haven't been able > to identify anything specific. From my experiences with Jon this isn't > unusual. Sometimes we seem to go through these cycles. He gets a > glazed look in his eye and he's off and running, doing his own thing. > > > > I'm fearful that because we're having problems on a daily basis right > now that the school is going to try and change his placement. > Ultimately that won't happen unless I decide it's in his best interest > and the district knows I'll go to war with them if they try and force my > hand but it will be a battle royal and I'm trying to avoid that. > > > > Could any of you share similar behavior experiences that you have with > your kids so I can try and make the school understand that it isn't Jon > and it isn't the way I parent but rather it's a part of the > exceptionality? Any suggestions or thoughts on the subject would be > greatly appreciated. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 Liz, Hey. a has to go the Endrocronolist on Jan. 25 to check out her Thyroid. Her PCP checked her blood and her levels were high (like6.6), she told me the normal high levels are 5.4. So, I was wondering if you knew of any questions I could ask them when I go. She is very small for her age. She is below the 50% even on the girls Down syndrome growth chart. She is 3'2 and weighs 40lbs, and she is 10 yrs old. Please anyone that knows anything the information will be appericated. Thanks, Stella (a's mom 10) > > Last Feb. Tori was admitted to CHOP because it was like she was crashing big time. Turns out her thyroid was totally out of whack. > > Liz > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 hmmm, when nathan acts like this they usually redirect him to another activity, and ofcourse his fav rewards. does jon have a visual schedule? knows whats going on everyday. And I have a general idea too, every morning we go over it before school for example today " school, basketball practice, lunch, work and home yaaaaa. I hit the major activities and he repeats them in perfect order before gets out of the truck to go into school each morning. He also has a schedule in school too they/he use--have for years, this really helps on transitioning from one class or activity to another. Another thing we started when he was a little guy in elementry school as he wouldn't transition in the least back then, it would take a groups of teachers to just try and carry the wet noodle, quite a site im sure many of you have delt with. Anyways the behavior psychologist suggested a transition item, such as a favorite toy, he is to carry it with him in the hallways etc between classes then it gets put back in his pocket or cubby etc. this was a life saver, It started off slow, just one task eg peg in board, then got 10minutes with fav toys and when timer went off time to work again. nowadays he usually just carries a car or strings or action figure in his sweatshirt pocket, occasionally will have his dangly woodies or monkies in his backpack, but they stay there throughout the day. He is always allowed to bring a few of his favorite items, its like name that tune, he will say 5, i will say 1, lol then he will say 3, and i go ok 3 and he picks out 3toys. Im sure somebody will have some good info. many hugs shawna In a message dated 2/7/2008 9:04:37 A.M. Central Standard Time, naylorj@... writes: Can't begin to tell everyone how helpful this list has been. Like so many others, I think the best thing has been knowing that others go through the same trials and tribulations as we do. It is truly incredible to read your posts and realize the commonalities among our children, especially when most of the rest of the world seems to be shaking their heads and making you feel like it's your fault and if only you'd discipline that child they'd behave. This has been one of the hardest things for me. Others have the belief that bumpy behaviors can be " fixed " and it's somehow a lack of parenting skill on my part. I could really use your help right now. My son Jon is 15 and while we've struggled to get a dual diagnosis I know he has Aspergers in addition to the Down Syndrome and ADHD. Right now we're having problems at school. Jon started off the year with minimal problems but as of late we're have issues with non compliance, running, sitting down and refusing to do work. Your basic kinds of meltdown behaviors. We've been trying to find some trigger for the behavior but haven't been able to identify anything specific. From my experiences with Jon this isn't unusual. Sometimes we seem to go through these cycles. He gets a glazed look in his eye and he's off and running, doing his own thing. I'm fearful that because we're having problems on a daily basis right now that the school is going to try and change his placement. Ultimately that won't happen unless I decide it's in his best interest and the district knows I'll go to war with them if they try and force my hand but it will be a battle royal and I'm trying to avoid that. Could any of you share similar behavior experiences that you have with your kids so I can try and make the school understand that it isn't Jon and it isn't the way I parent but rather it's a part of the exceptionality? Any suggestions or thoughts on the subject would be greatly appreciated. [Non-text portions of this message have been removed] **************Biggest Grammy Award surprises of all time on AOL Music. (http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\ 5 48) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 Tori is tiny too! She is 3'6 and 53 lbs. but my DH and both other girls are only 5'1 " and 5'4 " . Tori's was off the charts first time around; however, as soon as they started on the synthroid, she became he normal self. It was like she got a miracle drug. This can definitely interfere with their behaviors. And our kids are so suseptible to it. It took a few adjustments to get it controlled, but she has been great since. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 They are going to let her wait until the 25th??? I would get her in A.S.A.P.! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 oh yes!!! we use to do this lots with nathan when refusing to go to school, etc, and occasionally we still do, our fav is to the song " On our Way to Grandpa's Farm " ...were on our way were on our way , were on our way to nathan's school, at nathans school were going to read a book, etc. he loves this. shawna In a message dated 2/7/2008 11:49:04 A.M. Central Standard Time, jsricc@... writes: He also LOVES to have me put anything to a song with his name in it. It calms him down a lot. Like, instead of singing 'Here Come's Santa Clause' I might sing 'Here comes , here comes , he is going to work'... **************Biggest Grammy Award surprises of all time on AOL Music. (http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\ 5 48) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 Is there a reason to worry? > > They are going to let her wait until the 25th??? I would get her in A.S.A.P.! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 Well, I would think they would want her to start the meds asap if they test her again and it is still hi. I also think they lowered the level to anything over 4, but I can't guarantee my memory is that good. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 I don't know much since were very new to the double diagnosis but, our son has participated in daily walking and physical activiy since five years of age. The last 2 years in Special Olympics, the Peewee program and the Soccer program. He's slept through the night pretty much, unless he pees all over or get up to drink water. We, specially my husband, think that without this physical activity he wouldn't be able to calm down enough to do his homework, eat and go to sleep on time. Now, we worry about this surge of hormones in his coming adoslescent years. Vanina Brehm Help! > > Can't begin to tell everyone how helpful this list has been. Like so > many others, I think the best thing has been knowing that others go > through the same trials and tribulations as we do. It is truly > incredible to read your posts and realize the commonalities among our > children, especially when most of the rest of the world seems to be > shaking their heads and making you feel like it's your fault and if only > you'd discipline that child they'd behave. This has been one of the > hardest things for me. Others have the belief that bumpy behaviors can > be " fixed " and it's somehow a lack of parenting skill on my part. > > I could really use your help right now. My son Jon is 15 and while > we've struggled to get a dual diagnosis I know he has Aspergers in > addition to the Down Syndrome and ADHD. Right now we're having problems > at school. Jon started off the year with minimal problems but as of > late we're have issues with non compliance, running, sitting down and > refusing to do work. Your basic kinds of meltdown behaviors. We've > been trying to find some trigger for the behavior but haven't been able > to identify anything specific. From my experiences with Jon this isn't > unusual. Sometimes we seem to go through these cycles. He gets a > glazed look in his eye and he's off and running, doing his own thing. > > I'm fearful that because we're having problems on a daily basis right > now that the school is going to try and change his placement. > Ultimately that won't happen unless I decide it's in his best interest > and the district knows I'll go to war with them if they try and force my > hand but it will be a battle royal and I'm trying to avoid that. > > Could any of you share similar behavior experiences that you have with > your kids so I can try and make the school understand that it isn't Jon > and it isn't the way I parent but rather it's a part of the > exceptionality? Any suggestions or thoughts on the subject would be > greatly appreciated. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 One way to know for sure if your child has thyroid issues is to do an anti-thyroid antibody test. If the levels on that are high - it's a done deal, hypothyroidism. My son has Hashimoto's disease - his thyroid levels were high for a while but never high enough to really alarm a doctor even though I kept giving symptoms he was having. Once they did the antibody test - his levels were sky high! stellarah wrote: Liz, Hey. a has to go the Endrocronolist on Jan. 25 to check out her Thyroid. Her PCP checked her blood and her levels were high (like6.6), she told me the normal high levels are 5.4. So, I was wondering if you knew of any questions I could ask them when I go. She is very small for her age. She is below the 50% even on the girls Down syndrome growth chart. She is 3'2 and weighs 40lbs, and she is 10 yrs old. Please anyone that knows anything the information will be appericated. Thanks, Stella (a's mom 10) > > Last Feb. Tori was admitted to CHOP because it was like she was crashing big time. Turns out her thyroid was totally out of whack. > > Liz > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 It is amazing how difficult they can make it to pick them up. is 11(12 in March) and is 4'4 " and weighs 73 lbs. I just cannot pick her up anymore unless she helps me. She sat down on me in the middle of the road in front of a car last month. Scared me to death. My husband was close by and ran back to pick her up. I would have had to drag her out of the way. Carla Re: Help! Carla: Tori does this more often than not. She will be 8 on the 23rd, weighs 53 lbs., but when she wants to, she can make herself weigh about 200 lbs. Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2008 Report Share Posted February 7, 2008 Hi Vanina - I'm just curious - How old is your son again? He does homework for you? What grade is he in? I can't imagine doing any homework for us. He comes home from school and doesn't want to do anything that resembles school - he's beat! Anyone's kids have/do homework? Thanks, Jayne VANINA BREHM wrote: he wouldn't be able to calm down enough to do his homework check out the view from my shoes at www.wickedbusymomto3.wordpress.com --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2008 Report Share Posted February 8, 2008 Logan has some once in a while. HE is 8 and in a self contained room and in the 3rd grade. It is like pulling teeth just to get him to write his name at home. I hate homework!! :-) MElissa _____ From: [mailto: ] On Behalf Of Jayne Hickey Sent: Thursday, February 07, 2008 9:52 PM To: Subject: Re: Help! Hi Vanina - I'm just curious - How old is your son again? He does homework for you? What grade is he in? I can't imagine doing any homework for us. He comes home from school and doesn't want to do anything that resembles school - he's beat! Anyone's kids have/do homework? Thanks, Jayne VANINA BREHM <vbrehm16yahoo (DOT) <mailto:vbrehm16%40yahoo.com> com> wrote: he wouldn't be able to calm down enough to do his homework check out the view from my shoes at www.wickedbusymomto3.wordpress.com --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
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