Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Gosh Betty. You are dealing with so much. Some of what you described about Zoe is similar to what my son Zack is like but yours is magnefied quite a bit compared to us. Zack is 7 yrs old and has SPD and is non verbal. Like you, I was getting frustrated because alot of what Zack needs to do during the day does not come without an ordeal. brushing teeth. washing hair. getting dressed. etc. But we are lucky in the fact that he does not lash out at us physically. He just gets mad and screams and slaps the wall or slams the bedroom door. He was getting aggressive at school. If the cafeteria was too noisy, he would throw his lunch across the room. If he didn't want to do what his teacher or para asked him to do, he would run around the classroom and rip posters off the wall. Stuff like this would land him in the time out room where he would pick at his skin till he bled. Our doctor put him on Zoloft and then later when that wasn't quite doing the trick he added Risperdol. Zack cannot pronounce words so he knows alot of sign language. Does Zoe attend school? If so, does she act defiant while there, or is it just at home? I don't know how you do it. I have days where I just get so frustrated and want to " resign " from being a mommy! And here you have a much more difficult child. Makes me feel guilty for getting so frustrated and tired with Zack. There are alot of wonderful people here with lots of knowledge and experiences. I am sure you will get the support you need. Nice to meet you, Betty. I am Billie in Kansas. Mom to five kids. Zack is my youngest. ~*~Billie~*~ On Fri Jul 13 8:54 , Betty sent: > > > > > > > > > > > > > > > > > > Thought I would write again after having a nights sleep. Â what I do not understand is things are getting worse and not better. I have been told so many times that as she gets older it will be easier. Right now we are at a point where we cannot find anything easy about her. Eating is a fight, taking meds is a horrible fight, going to bed is a fight. she takes her meds and will not lay down due to the adhd, we have to wait till she literally collapses on the floor and falls asleep which can take up to 2 to 3 hours. that is with meds to make her sleep. getting her dressed is an issue, changing her diaper is a mess, watching her videos is a never ending changing of them every few minutes. she loved car rides, but as of last week everytime she gets into a car it is a tantrum. she crawls out of her seat, turns it upside down, hits, pinches, scratches you name it, all because she wants what she sees outside of car!! she > has taken to > running out of house and running into traffic if she finds an unlocked door, crawls into washer and dryer, pours her drinks out onto floor as soon as she gets them, while taking a bath she pours water out of tub onto floor, then throws a fit if water is not running entire time she is in bath tub. and the list goes on. Â she is able to talk, but it is only phrases that she has learned to repeat. we have taught her a few words to communicate, she also uses sign language. she is fully ok in gross motor skills. she is six with a mentality of a 2 year old. and yes we are going throught the terrible twos also. Â we have seen neurophycologist, neurologist, pychiatrist, OT, ST, DT, PT, behaviorist. Â today so far has been a good day. I hope it continues like this. I love my daughter with everything in me. she usually laughs and sings and dances all the time, but here anymore I never get to > see that side for some reason. I believe part of that is the removel of the respirdol. I am going to request she be taken off the serequil and put back on a higher dose of respirdol. Â sorry this is long, just I have never met others who go through the same thing as we do everyday. I am tired of being alone since we cannot take her out in public. I hope after we move I have good news to share. Â thanks Betty, mom to zoe age 6 shaken baby, adha, ocd, odd > Shape Yahoo! in your own image. >Join our Network Research Panel today! > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Betty, Why did you take her off resperdal? Lois More on zoe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 I wish I had some answers for you but I can tell you that you are a great Mum and Zoe is lucky to have you in her life. Keep after the professionals...there has to be some way they can help you communicate with Zoe and help her enjoy life more. Hang in there . <<hugs>> Missy More on zoe Thought I would write again after having a nights sleep. what I do not understand is things are getting worse and not better. I have been told so many times that as she gets older it will be easier. Right now we are at a point where we cannot find anything easy about her. Eating is a fight, taking meds is a horrible fight, going to bed is a fight. she takes her meds and will not lay down due to the adhd, we have to wait till she literally collapses on the floor and falls asleep which can take up to 2 to 3 hours. that is with meds to make her sleep. getting her dressed is an issue, changing her diaper is a mess, watching her videos is a never ending changing of them every few minutes. she loved car rides, but as of last week everytime she gets into a car it is a tantrum. she crawls out of her seat, turns it upside down, hits, pinches, scratches you name it, all because she wants what she sees outside of car!! she has taken to running out of house and running into traffic if she finds an unlocked door, crawls into washer and dryer, pours her drinks out onto floor as soon as she gets them, while taking a bath she pours water out of tub onto floor, then throws a fit if water is not running entire time she is in bath tub. and the list goes on. she is able to talk, but it is only phrases that she has learned to repeat. we have taught her a few words to communicate, she also uses sign language. she is fully ok in gross motor skills. she is six with a mentality of a 2 year old. and yes we are going throught the terrible twos also. we have seen neurophycologist, neurologist, pychiatrist, OT, ST, DT, PT, behaviorist. today so far has been a good day. I hope it continues like this. I love my daughter with everything in me. she usually laughs and sings and dances all the time, but here anymore I never get to see that side for some reason. I believe part of that is the removel of the respirdol. I am going to request she be taken off the serequil and put back on a higher dose of respirdol. sorry this is long, just I have never met others who go through the same thing as we do everyday. I am tired of being alone since we cannot take her out in public. I hope after we move I have good news to share. thanks Betty, mom to zoe age 6 shaken baby, adha, ocd, odd Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Hi Betty, We all have some days that are better than others. Hang in there. At times I feel the same way about my son, why are things getting worse? What is going on? Things are suppose to get better, not worse!!! Well, I guess when you have special children like these anything could set them off. Change in routine is a big one. Now that summer is here and the routine is different, oh boy! My son could go hours without an episode, I guess I just have to tell myself that is the time to enjoy him and save up the energy for all the tantrums and behaviors when they are happening. A lot of the things you say about Zoe my son did or does. We had a hard time with him staying in his car seat for a long time. He used to hit/attack me while I was driving....it was crazy. He's gotten better with that. You really have your hands full, I hope things get better for you. > > Thought I would write again after having a nights sleep. > > what I do not understand is things are getting worse and not better. I have been told so many times that as she gets older it will be easier. Right now we are at a point where we cannot find anything easy about her. Eating is a fight, taking meds is a horrible fight, going to bed is a fight. she takes her meds and will not lay down due to the adhd, we have to wait till she literally collapses on the floor and falls asleep which can take up to 2 to 3 hours. that is with meds to make her sleep. getting her dressed is an issue, changing her diaper is a mess, watching her videos is a never ending changing of them every few minutes. she loved car rides, but as of last week everytime she gets into a car it is a tantrum. she crawls out of her seat, turns it upside down, hits, pinches, scratches you name it, all because she wants what she sees outside of car!! > she has taken to running out of house and running into traffic if she finds an unlocked door, crawls into washer and dryer, pours her drinks out onto floor as soon as she gets them, while taking a bath she pours water out of tub onto floor, then throws a fit if water is not running entire time she is in bath tub. and the list goes on. > > she is able to talk, but it is only phrases that she has learned to repeat. we have taught her a few words to communicate, she also uses sign language. she is fully ok in gross motor skills. she is six with a mentality of a 2 year old. and yes we are going throught the terrible twos also. > > we have seen neurophycologist, neurologist, pychiatrist, OT, ST, DT, PT, behaviorist. > > today so far has been a good day. I hope it continues like this. I love my daughter with everything in me. she usually laughs and sings and dances all the time, but here anymore I never get to see that side for some reason. I believe part of that is the removel of the respirdol. I am going to request she be taken off the serequil and put back on a higher dose of respirdol. > > sorry this is long, just I have never met others who go through the same thing as we do everyday. I am tired of being alone since we cannot take her out in public. I hope after we move I have good news to share. > > thanks > Betty, > mom to zoe age 6 > shaken baby, adha, ocd, odd > > > --------------------------------- > Shape Yahoo! in your own image. Join our Network Research Panel today! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Hi Billie, I'm . You have your hands full also with 5 young ones! I only have 3, my youngest is 6 with the special needs. I must say I know how you feel when you told Betty that she sounded like she had it so much harder with Zoe. I feel the same way at times when I read all these stories. I understand I have a special needs child...not necessarily autistic....but special needs. I think we probably all have really hard times and then better times. We are all basically in the same position, hard to handle kids. All I think of is just think of how much stronger we must be than other mothers. I didn't say better or anything like that. Just stronger emotionally, maybe? Even physically? (I'm constantly restraining my son and carrying him around at 6 yrs. old and over 60lbs.) But anyway, I do feel guilty at times when I think of it. For some of the mother's who's child doesn't speak....when mine does with a language delay, I feel like I shouldn't even be here, that my situation isn't as difficult but I guess it is in different ways just as hard. Sorry, I'm rambling.... > > Gosh Betty. You are dealing with so much. Some of what you > described about Zoe is similar to what my son Zack is like > but yours is magnefied quite a bit compared to us. Zack is > 7 yrs old and has SPD and is non verbal. Like you, I was getting frustrated > because alot of what Zack needs to do during the day > does not come without an ordeal. brushing teeth. washing > hair. getting dressed. etc. But we are lucky in the > fact that he does not lash out at us physically. He just > gets mad and screams and slaps the wall or slams the > bedroom door. He was getting aggressive at school. If the > cafeteria was too noisy, he would throw his lunch across > the room. If he didn't want to do what his teacher or para > asked him to do, he would run around the classroom and rip > posters off the wall. Stuff like this would land him in > the time out room where he would pick at his skin till he > bled. Our doctor put him on Zoloft and then > later when that wasn't quite doing the trick he added > Risperdol. Zack cannot pronounce words so he knows alot of > sign language. Does Zoe attend school? If so, does she > act defiant while there, or is it just at home? I don't > know how you do it. I have days where I just get so frustrated > and want to " resign " from being a mommy! And here you have > a much more difficult child. Makes me feel guilty for > getting so frustrated and tired with Zack. > There are alot of wonderful people here with lots of > knowledge and experiences. I am sure you will get the > support you need. > Nice to meet you, Betty. I am Billie in Kansas. Mom to five kids. > Zack is my youngest. > > > ~*~Billie~*~ > > On Fri Jul 13 8:54 , Betty sent: > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Thought I would write again after having a nights sleep. Â what I do not > understand is things are getting worse and not better. I have been told so many times that as > she gets older it will be easier. Right now we are at a point where we cannot find anything > easy about her. Eating is a fight, taking meds is a horrible fight, going to bed is a fight. > she takes her meds and will not lay down due to the adhd, we have to wait till she literally > collapses on the floor and falls asleep which can take up to 2 to 3 hours. that is with meds to > make her sleep. getting her dressed is an issue, changing her diaper is a mess, watching her > videos is a never ending changing of them every few minutes. she loved car rides, but as of > last week everytime she gets into a car it is a tantrum. she crawls out of her seat, turns it > upside down, hits, pinches, scratches you name it, all because she wants what she sees outside > of car!! she > > has taken to > > running out of house and running into traffic if she finds an unlocked door, crawls into > washer and dryer, pours her drinks out onto floor as soon as she gets them, while taking a bath > she pours water out of tub onto floor, then throws a fit if water is not running entire time > she is in bath tub. and the list goes on. Â she is able to talk, but it is only phrases that > she has learned to repeat. we have taught her a few words to communicate, she also uses sign > language. she is fully ok in gross motor skills. she is six with a mentality of a 2 year old. > and yes we are going throught the terrible twos also. Â we have seen neurophycologist, > neurologist, pychiatrist, OT, ST, DT, PT, behaviorist. Â today so far has been a good day. I > hope it continues like this. I love my daughter with everything in me. she usually laughs and > sings and dances all the time, but here anymore I never get to > > see that side for some reason. I believe part of that is the removel of the respirdol. I am > going to request she be taken off the serequil and put back on a higher dose of respirdol. Â > sorry this is long, just I have never met others who go through the same thing as we do > everyday. I am tired of being alone since we cannot take her out in public. I hope after we > move I have good news to share. Â thanks Betty, mom to zoe age 6 shaken baby, adha, ocd, > odd > > Shape Yahoo! in your own image. > >Join our Network Research Panel today! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 you are not alone my friend kind regards shell http://groups.msn.com/autismaspergersinthefamily ___________________________________________________________ What kind of emailer are you? Find out today - get a free analysis of your email personality. Take the quiz at the Yahoo! Mail Championship. http://uk.rd.yahoo.com/evt=44106/*http://mail.yahoo.net/uk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Have you taken her to a DAN Doctor? There are so many natural and alternative things they do that regular doctors will not that can greatly helpGet a sneak peak of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2007 Report Share Posted July 14, 2007 Betty, my 9yr old son is also a shaken baby survivor and autistic. I'm sorry you and your daughter are having such a difficult time. Toby has gotten better with age. Functional behavioral assessments and interventions such as brushing and deep pressure have been helpful for him. But I do think his meds calm him enough to allow those things to help. Risperdal has helped him for several years. He also has ADHD. Have you tried any of the ADHD meds with Zoe? Ritalin did not do much for Toby but Metadate has been a real blessing. Melatonin helps him sleep but I think that may work because he has cortical visual impairment. Have you tried a different seizure med? Some of them can have behavioral effects as well. I know all our children react differently to different meds. Just wanted to let you know what works for us. Hoping for calmer times for both of you. Margaret, mom to Toby, SBS, Autism, seizures, ADHD, SID, CVIGet a sneak peak of the all-new AOL.com. Quote Link to comment Share on other sites More sharing options...
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