queen
06-26-2003, 07:56 PM
I posted some of the symptons on the thread "Desperate for info"...just waiting for a reply....I really want to talk with other people who understand what I'm going through and help lead me in a direction to help this child live on her own...thank you for your response in advance....
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~airforcewife~
06-27-2003, 04:36 AM
Hi there! :wave: Sorry it took me so long to reply. After reading about your stepdaughter, it really does sound like she has some issues. I know you might not want to interfere to the point of ticking off your husband and his ex, but you really do need to throw it at them. A child her age should be able to do normal daily functions and from what you've described, she just can't. Her parents need to realize that she should be doing so much more than what she can do.
Whether it be Autism or something else, she needs to be seen and diagnosed so she can get the proper help early on. Every child deserves that. You could always print this out to show your hubby.
My 7 year old daughter has Asperger's Syndrome. She is high functioning and can do much of the things other kids her age can do. Some thing's she can't yet do alone are bathing, going to the bathroom (I still have to wipe her), making a sandwich, small things like that. She does the humming, she rocks, sometimes it seems as if she's looking right through us. She does have some problems with her speech. She has very little friends and she just doesn't care that she doesn't. She prefers to be inside much of the time, unless we drag her outside. She eats certain foods and WILL NOT try anything new. Basically, the list goes on and on....
She has also been diagnosed with OCD and WPW (heart condition). I'll write some more tomorrow!
------------------
~ Proud Military Wife & Mother Of 3 Beautiful Children! ~
Whether it be Autism or something else, she needs to be seen and diagnosed so she can get the proper help early on. Every child deserves that. You could always print this out to show your hubby.
My 7 year old daughter has Asperger's Syndrome. She is high functioning and can do much of the things other kids her age can do. Some thing's she can't yet do alone are bathing, going to the bathroom (I still have to wipe her), making a sandwich, small things like that. She does the humming, she rocks, sometimes it seems as if she's looking right through us. She does have some problems with her speech. She has very little friends and she just doesn't care that she doesn't. She prefers to be inside much of the time, unless we drag her outside. She eats certain foods and WILL NOT try anything new. Basically, the list goes on and on....
She has also been diagnosed with OCD and WPW (heart condition). I'll write some more tomorrow!
------------------
~ Proud Military Wife & Mother Of 3 Beautiful Children! ~
queen
06-27-2003, 09:42 AM
Thank you so much for replying, I need all the information I can get.....airforcewife I just dont know how in the world I can get them to open their eyes, she's going into the first grade and I know that she is already behind so they might as well just throw her to the wolves....my husband is very offended when I mention anything.....I mean he's in complete denial along with the rest of his family...
She just started to wipe herself because I refused to do it and told my husband that it was ridiculous if he kept doing it, I mean they dont think there is a problem....but I about died the other day when she didnt even know how to make a sandwich, my 8 year old son walked her through it, how sad....I really think they have waited too long to start some intervention, even though she functions for the most part like a normal child in the physical capacity, something in that head of hers just doesnt conect....another thing how does your daughter act at birthdays christmas or other holidays that she receives gifts....I'm curious...I hope to hear from you soon...please know how grateful I am that you will share with me....
She just started to wipe herself because I refused to do it and told my husband that it was ridiculous if he kept doing it, I mean they dont think there is a problem....but I about died the other day when she didnt even know how to make a sandwich, my 8 year old son walked her through it, how sad....I really think they have waited too long to start some intervention, even though she functions for the most part like a normal child in the physical capacity, something in that head of hers just doesnt conect....another thing how does your daughter act at birthdays christmas or other holidays that she receives gifts....I'm curious...I hope to hear from you soon...please know how grateful I am that you will share with me....
Pandabaire3
06-27-2003, 10:02 AM
Queen, I've read your posts and there are similar traits that my high function son (5 years old) and your step daughter have in common. I'm not a professional of any sort in regards to diagnosing autism, but it sure wouldn't surprise me if this child was diagnosed with high function or PDD.
I don't really know what to tell you because I think it's diplorable that these parents wouldn't get the necessary help needed for this child - all in the name of vanity - basically because THEIR too GOOD to have an austic child....that happens to OTHER people. (rolls eyes)
I think it would be of some importance to find out a few things about the families of both the child's mother and father - for instance, are there any cases of learning disabilities of any kind, in a cousin, aunt, uncle, sister or brother of the parents or their children...is there any sort of history of depression in the families by any one at all - grandparents, parents, siblings of parents, their kids and so on. For example, depression runs on my side of the family and I even suffered with post partum depression after my son's birth. Both my husband's family and my family have had members that had delays in learning for some reason. My husband's cousin also has a son who has been diagnosed as autistic. Chances are very high that there is SOMETHING in the family background of either the mother or father of this little girl that will point into the autistic spectrum direction if she indeed DOES have autism.
I do know that early intervention is the key and unfortunatly, at her age, the main damage might be done. I don't know....your husband is in denial about it and won't get her properly diagnosed..and if she isn't properly diagnosed, the school system cannot help her in the proper way that she should be helped as far as getting her into speech therapy and other things.
Would it possibly help you to print out your questions and all the responses you've gotten and then show him? Tell him to read them over very carefully and be honest with himself about her abilities and every day fuctioning? That poor girl is going to eventually sink to the bottom because socially she will be outcast - that's not healthy and it cannot be good for self esteem as she gets older.
I wish you (and your step daughter) lots of luck with this.
Tonya
I don't really know what to tell you because I think it's diplorable that these parents wouldn't get the necessary help needed for this child - all in the name of vanity - basically because THEIR too GOOD to have an austic child....that happens to OTHER people. (rolls eyes)
I think it would be of some importance to find out a few things about the families of both the child's mother and father - for instance, are there any cases of learning disabilities of any kind, in a cousin, aunt, uncle, sister or brother of the parents or their children...is there any sort of history of depression in the families by any one at all - grandparents, parents, siblings of parents, their kids and so on. For example, depression runs on my side of the family and I even suffered with post partum depression after my son's birth. Both my husband's family and my family have had members that had delays in learning for some reason. My husband's cousin also has a son who has been diagnosed as autistic. Chances are very high that there is SOMETHING in the family background of either the mother or father of this little girl that will point into the autistic spectrum direction if she indeed DOES have autism.
I do know that early intervention is the key and unfortunatly, at her age, the main damage might be done. I don't know....your husband is in denial about it and won't get her properly diagnosed..and if she isn't properly diagnosed, the school system cannot help her in the proper way that she should be helped as far as getting her into speech therapy and other things.
Would it possibly help you to print out your questions and all the responses you've gotten and then show him? Tell him to read them over very carefully and be honest with himself about her abilities and every day fuctioning? That poor girl is going to eventually sink to the bottom because socially she will be outcast - that's not healthy and it cannot be good for self esteem as she gets older.
I wish you (and your step daughter) lots of luck with this.
Tonya
queen
06-27-2003, 11:07 AM
Thank you for you post...
I had written a long message earlier then my computer went down....so I'll write a shorter one this time..
Yes it is a shame that they are in denial and yes I do think there is alot of damage already done at this point to correct it to the point of her being able to live on her own...really...
I've been reading alot of articles on the internet regarding this Asperger....she exhibits alot if not all of the same charcteristics...
Here are some more of the things she does that really concern me...
When she is doing her ABC's she has to start at the beginning to find out where she is...like if she is on "J" instead of just knowing that the next letter is "K" she has to go back to "A" to get to the next letter and she has to continue this process until she is done....
She's a drooler, she has poor table habits, poor I mean since she'll be in the first grade she will have the opportunity to eat lunch at school, she will look like a mess...my 16 month old daughter doesnt get as messy as she does....it's amazing that her parents arent concerned about any of these daily functions.
She is definately going to be a great target for bullying if she already isnt but she doesnt even have the comprehending ability to know if someone is making fun of her or not so who knows what is going on at school....
I think I've said this before but she has an IEP for speech. I dont know how in the world she is going to make it through the first grade....10 spelling words a week, 15 vocabulary words a week, 2 math papers every night, and 3 stories a week, she cant even talk right let alone be able to read and comprehend all the other info....do teachers look at these issues...why hasnt her pediatrician seen these problems???? I just can't believe they can't see this...
I would love to be able to approach my husband with all this info but it wouldnt make a difference...he'd say it's just a "phase" or tell me she just has "slow speech" I'm not the only one who sees this, her babysitter has talked to me about it, my mother has talked with me about it and some lady I hadnt seen in years ask me about her and if she was in any programs..of course she's not...she gets maybe 20 minutes of speech theapy a week in a group setting at school....that's good enough right, especially when you really can understand a word she says....oh, another thing she does is she does not use the words "he" or "she" she says "him" and "her".....and no one corrects her but me....and sometimes I get so frustrated with my husband and his family that they dont correct her I just let her use the words inappropriately....I feel horrible but my hands are tied at this point....
Thanks again for the post and letting me vent and tell more of my story...please reply I need the validation and advise.....God Bless all of you for your strenght to share.......
I had written a long message earlier then my computer went down....so I'll write a shorter one this time..
Yes it is a shame that they are in denial and yes I do think there is alot of damage already done at this point to correct it to the point of her being able to live on her own...really...
I've been reading alot of articles on the internet regarding this Asperger....she exhibits alot if not all of the same charcteristics...
Here are some more of the things she does that really concern me...
When she is doing her ABC's she has to start at the beginning to find out where she is...like if she is on "J" instead of just knowing that the next letter is "K" she has to go back to "A" to get to the next letter and she has to continue this process until she is done....
She's a drooler, she has poor table habits, poor I mean since she'll be in the first grade she will have the opportunity to eat lunch at school, she will look like a mess...my 16 month old daughter doesnt get as messy as she does....it's amazing that her parents arent concerned about any of these daily functions.
She is definately going to be a great target for bullying if she already isnt but she doesnt even have the comprehending ability to know if someone is making fun of her or not so who knows what is going on at school....
I think I've said this before but she has an IEP for speech. I dont know how in the world she is going to make it through the first grade....10 spelling words a week, 15 vocabulary words a week, 2 math papers every night, and 3 stories a week, she cant even talk right let alone be able to read and comprehend all the other info....do teachers look at these issues...why hasnt her pediatrician seen these problems???? I just can't believe they can't see this...
I would love to be able to approach my husband with all this info but it wouldnt make a difference...he'd say it's just a "phase" or tell me she just has "slow speech" I'm not the only one who sees this, her babysitter has talked to me about it, my mother has talked with me about it and some lady I hadnt seen in years ask me about her and if she was in any programs..of course she's not...she gets maybe 20 minutes of speech theapy a week in a group setting at school....that's good enough right, especially when you really can understand a word she says....oh, another thing she does is she does not use the words "he" or "she" she says "him" and "her".....and no one corrects her but me....and sometimes I get so frustrated with my husband and his family that they dont correct her I just let her use the words inappropriately....I feel horrible but my hands are tied at this point....
Thanks again for the post and letting me vent and tell more of my story...please reply I need the validation and advise.....God Bless all of you for your strenght to share.......
Oma61
06-27-2003, 11:35 AM
queen,
Since she has only completed kindergarten hopefully when she gets into 1st grade, some of these problems will be identified by the school. 1st grade is a lot different than K, and it seems like the school may take more notice when it's obvious that she can't keep up. I know, I know...sometimes the school is not too good about identifying problems, but if she has severe problems like it seems she does, the school may very well take notice.
airforcewife,
I would be very interested to read more posts by you because my daughter is 7, AS and seems to have some very similar issues as your daughter. Everything you wrote about your girl is exactly like mine, except for the going outside part...my girl only wants to be outside! She likes animals (is obsessed with) and nature.
Since she has only completed kindergarten hopefully when she gets into 1st grade, some of these problems will be identified by the school. 1st grade is a lot different than K, and it seems like the school may take more notice when it's obvious that she can't keep up. I know, I know...sometimes the school is not too good about identifying problems, but if she has severe problems like it seems she does, the school may very well take notice.
airforcewife,
I would be very interested to read more posts by you because my daughter is 7, AS and seems to have some very similar issues as your daughter. Everything you wrote about your girl is exactly like mine, except for the going outside part...my girl only wants to be outside! She likes animals (is obsessed with) and nature.
queen
06-27-2003, 12:14 PM
Oma61
Thank you for your reply...but let me tell you a little bit about the school...my husbands sister is an "LD" teacher at the school and has been for the last 15-20 years, tell me that's not complete denial by everyone involved...anyway...I think just because of the last name they will do whatever is neccessary to keep her passing...see what I'm trying to say...really she shouldnt be going into the first grade in my opinion....but I'm not a doctor...so why didnt the Kindergarden teacher see anything, really I think she did but didnt know how to approach them. Her teacher goes to our church and always comments how well behaved she is, well yeah, she doesnt talk or intitate anything how could she be anything but well behaved...come on....I cant wait to hear back from airforcewife too, I'd love to hear from Joanne...all replys appreciated
Thank you for your reply...but let me tell you a little bit about the school...my husbands sister is an "LD" teacher at the school and has been for the last 15-20 years, tell me that's not complete denial by everyone involved...anyway...I think just because of the last name they will do whatever is neccessary to keep her passing...see what I'm trying to say...really she shouldnt be going into the first grade in my opinion....but I'm not a doctor...so why didnt the Kindergarden teacher see anything, really I think she did but didnt know how to approach them. Her teacher goes to our church and always comments how well behaved she is, well yeah, she doesnt talk or intitate anything how could she be anything but well behaved...come on....I cant wait to hear back from airforcewife too, I'd love to hear from Joanne...all replys appreciated
~airforcewife~
06-27-2003, 08:59 PM
Hi there! :)
I've been picking my brain today! Not sure if anything in there is working, though! ;)
When my daughter was "officially" diagnosed, it was a huge relief to me. We knew that there was something going on, but we weren't sure exactly what it was. The doctors in our hometown passed it off as a phase. When we moved to California 3 1/2 years ago, she got worse. Finally, when she was in Kindergarten, her teacher called me one night and said, "I know this may sound strange, but your daughter is Autistic and I think it might be Asperger's Syndrome". There was something about this woman, her teacher...I never questioned her for a second. She just knew. I made an appt. the next day for my daughter and got the ball rolling. Within the next few months, she was tested and tested and tested some more. Diagnosis time came around and sure enough, it was Asperger's, as well as PDD, and OCD. Her teacher had had a little boy with AS in her class the previous year and she said the similarities between him and my girl were identical. He wasn't as high functioning as my daughter and he required a F/T aid. She also has a son with AS who just graduated med school and is on his way to becoming a Pediatrician, I thank God for that teacher every day and we've become great friends. :D
I'm trying to remember...my daughter didn't speak until she was around 3 years old. That was my first clue. While her dad and the rest of the family were sitting around saying she was just a "late bloomer" and that she would "catch up soon", my mind was spinning. Of course no parent wants to think there might be something wrong with their child. :eek: I sure didn't! But I got over that very quickly.
My daughter is dyslexic. She writes backwards, and most of the time she writes not only backwards, but goes from right to left instead of left to right. You can only imagine what one of her papers looks like! http://www.healthboards.com/ubb/dizzy.gif I told you earlier about the food issue. She is not just a picky eater...it is absolutely mandatory that she eats one of "her" foods. I have a lot of friends who say they wouldn't tolerate that, etc. but IMO, it would do her more harm to try to force her to eat what I know she will not. Socially, she's a mess. I went to her school one day during recess to observe her without her knowing I was there. She played quietly in a corner of the playground, all by herself. Others did come try to play with her, but she turned her back to them. She was content alone. She doesn't cry, she rarely smiles (besides the fake picture taking smile!), she avoids eye contact, she seems to have no emotions. Thankfully that is getting better...she actually seemed worried the other day when her sister cut her foot on one of our walks. That was a huge milestone for us. She also can't tie her shoes and when we try to teach her, she just watches us. I know not every 7 year old knows how to tie their shoes, but a good majority do by this age. She can't ride a bike...hers still has training wheels and even with those, it's very hard for her. Loud noise...forget it! The 4th of July fireworks and Christmas parades are a thing of the past for us. She is not able to understand figures of speech, she can't tell when one is joking or serious. Geez, there is just so much!
I don't know queen, it is so apparent to us that your stepdaughter needs help fast. I can't imagine being a parent to a child like that and ignoring those signs that are jumping out all over the place. It makes me very sad to hear of something like that because she is suffering when she could be getting help. 20 minutes of speech therapy a week is not going to cut it.
Your hubby needs to wake up, it's just a matter of getting him to do so. I guess only you know how far you can push your husband with this issue. :( I'm not sure what more can be done if the parents just flat out refuse.
Let me tell you about some of the testing. On the WISC test, there are 2 major sections...verbal and performance. Verbal, Performance, and Full Scale IQ scores have a mean of 100, and scores between 85 and 115 are within the "average" range. Scores on the Verbal and Performance subtests have a mean of 10, with scores between 8 and 12 falling within the "average" range. My daughter's Verbal IQ score was 71, Performance was 83, and Full Scale was 71. Her scores placed her in the low average to borderline range of intellectual functioning. Her fund of information about the world was at the low end of average compared to most of her age mates, as was her word use vocabulary. She had an extremely low Picture Completion score, which suggests that she does not attend to visual details in the environment. She had horrible Math scores! She did test above average in block design and picture arrangement.
Another test was the PPVT-R. This test is given in order to obtain info about receptive vocabulary. Her PVVT standard score was 72 which placed her at the 3rd percentile with an age equivalent of 4 years 11 months old.
Another test was Bender-Gestalt, which assesses visual perception and perceptual motor capacity. My daughter's performance revealed perceptual motor immaturity.
On to the ASDS (Asperger's Syndrome Diagnostic Scale)...My daughter's specific
problem area identifed were Maladaptive Behavior and Sensory Motor Behavior.
So the final deal was AS, PDD NOS, OCD, DBD (Disruptive Behavior Disorder).
Well, I think I'm confusing myself! I'll go now and give my fingers and your eyes a break from reading all this!
:wave:
------------------
~ Proud Military Wife & Mother Of 3 Beautiful Children! ~
I've been picking my brain today! Not sure if anything in there is working, though! ;)
When my daughter was "officially" diagnosed, it was a huge relief to me. We knew that there was something going on, but we weren't sure exactly what it was. The doctors in our hometown passed it off as a phase. When we moved to California 3 1/2 years ago, she got worse. Finally, when she was in Kindergarten, her teacher called me one night and said, "I know this may sound strange, but your daughter is Autistic and I think it might be Asperger's Syndrome". There was something about this woman, her teacher...I never questioned her for a second. She just knew. I made an appt. the next day for my daughter and got the ball rolling. Within the next few months, she was tested and tested and tested some more. Diagnosis time came around and sure enough, it was Asperger's, as well as PDD, and OCD. Her teacher had had a little boy with AS in her class the previous year and she said the similarities between him and my girl were identical. He wasn't as high functioning as my daughter and he required a F/T aid. She also has a son with AS who just graduated med school and is on his way to becoming a Pediatrician, I thank God for that teacher every day and we've become great friends. :D
I'm trying to remember...my daughter didn't speak until she was around 3 years old. That was my first clue. While her dad and the rest of the family were sitting around saying she was just a "late bloomer" and that she would "catch up soon", my mind was spinning. Of course no parent wants to think there might be something wrong with their child. :eek: I sure didn't! But I got over that very quickly.
My daughter is dyslexic. She writes backwards, and most of the time she writes not only backwards, but goes from right to left instead of left to right. You can only imagine what one of her papers looks like! http://www.healthboards.com/ubb/dizzy.gif I told you earlier about the food issue. She is not just a picky eater...it is absolutely mandatory that she eats one of "her" foods. I have a lot of friends who say they wouldn't tolerate that, etc. but IMO, it would do her more harm to try to force her to eat what I know she will not. Socially, she's a mess. I went to her school one day during recess to observe her without her knowing I was there. She played quietly in a corner of the playground, all by herself. Others did come try to play with her, but she turned her back to them. She was content alone. She doesn't cry, she rarely smiles (besides the fake picture taking smile!), she avoids eye contact, she seems to have no emotions. Thankfully that is getting better...she actually seemed worried the other day when her sister cut her foot on one of our walks. That was a huge milestone for us. She also can't tie her shoes and when we try to teach her, she just watches us. I know not every 7 year old knows how to tie their shoes, but a good majority do by this age. She can't ride a bike...hers still has training wheels and even with those, it's very hard for her. Loud noise...forget it! The 4th of July fireworks and Christmas parades are a thing of the past for us. She is not able to understand figures of speech, she can't tell when one is joking or serious. Geez, there is just so much!
I don't know queen, it is so apparent to us that your stepdaughter needs help fast. I can't imagine being a parent to a child like that and ignoring those signs that are jumping out all over the place. It makes me very sad to hear of something like that because she is suffering when she could be getting help. 20 minutes of speech therapy a week is not going to cut it.
Your hubby needs to wake up, it's just a matter of getting him to do so. I guess only you know how far you can push your husband with this issue. :( I'm not sure what more can be done if the parents just flat out refuse.
Let me tell you about some of the testing. On the WISC test, there are 2 major sections...verbal and performance. Verbal, Performance, and Full Scale IQ scores have a mean of 100, and scores between 85 and 115 are within the "average" range. Scores on the Verbal and Performance subtests have a mean of 10, with scores between 8 and 12 falling within the "average" range. My daughter's Verbal IQ score was 71, Performance was 83, and Full Scale was 71. Her scores placed her in the low average to borderline range of intellectual functioning. Her fund of information about the world was at the low end of average compared to most of her age mates, as was her word use vocabulary. She had an extremely low Picture Completion score, which suggests that she does not attend to visual details in the environment. She had horrible Math scores! She did test above average in block design and picture arrangement.
Another test was the PPVT-R. This test is given in order to obtain info about receptive vocabulary. Her PVVT standard score was 72 which placed her at the 3rd percentile with an age equivalent of 4 years 11 months old.
Another test was Bender-Gestalt, which assesses visual perception and perceptual motor capacity. My daughter's performance revealed perceptual motor immaturity.
On to the ASDS (Asperger's Syndrome Diagnostic Scale)...My daughter's specific
problem area identifed were Maladaptive Behavior and Sensory Motor Behavior.
So the final deal was AS, PDD NOS, OCD, DBD (Disruptive Behavior Disorder).
Well, I think I'm confusing myself! I'll go now and give my fingers and your eyes a break from reading all this!
:wave:
------------------
~ Proud Military Wife & Mother Of 3 Beautiful Children! ~
~airforcewife~
06-27-2003, 09:14 PM
.
------------------
~ Proud Military Wife & Mother Of 3 Beautiful Children! ~
[This message has been edited by ~airforcewife~ (edited 06-27-2003).]
------------------
~ Proud Military Wife & Mother Of 3 Beautiful Children! ~
[This message has been edited by ~airforcewife~ (edited 06-27-2003).]
Pandabaire3
06-27-2003, 10:35 PM
You know....I hate to even suggest this but here goes....since your are her step mother and presumably have some sort of relationship with the girl when she visits....is it at all possible for you to find out information on who to see as an autism specialist in your area and make an appointment to take her in when no one else knows about it? Or is there any way to talk to the teachers in her school about your concerns - I mean, you could make an appointment with someone in the department at school that handles these issues and they have tests that they can give her to find out how she scores...tell the teachers exactly what you have told us - that no one else seems to be noticing or caring much about what's going on in that little girl's head. As a part of her IEP, I know you mentioned speech....did anyone fight on that child's behalf for the maximum speech that can be given? (my child had speech in Early Childhood for 20 minutes 2 times a week I believe, along with occupational therapy - and I supplimented with 30 minutes of speech per week privately outside of school. Perhaps at the next IEP meeting they could metion skills that need to be worked on, such as eating - I know they fixed my son because he just kept eating with his hands at home and couldn't use utensils right until they taught him.
My son will be entering "normal" kindergarten in the fall and will have help on occasion from an aide....I'm not even worried about his acedemic success because I know he's intelligent...so I made sure that his new IEP contained mostly social skills to have improvements made so that he's not outcast and can appear to be normal when meeting new kids.
My son will be entering "normal" kindergarten in the fall and will have help on occasion from an aide....I'm not even worried about his acedemic success because I know he's intelligent...so I made sure that his new IEP contained mostly social skills to have improvements made so that he's not outcast and can appear to be normal when meeting new kids.
queen
06-28-2003, 09:08 PM
Airforcewife / Pandabaire3
Thank you airforcewife for your very informative post. I'm also digesting Pandabaire3 posts.
Regarding Pandabaire3 post about taking her to get her tested well I would be more than willing to do that but after I have her tested than what, I come home and say "Hey honey went and had her tested and she is AS OCD....." I really dont know her history as a child like when she started to talk, although if my memory serves me right her family said the same thing about her that she was a late bloomer....
I had said on an earlier post that she has not been diagnosed with anything..she has an IEP for speech that's it....I cant imagine someone testing her and not seeing something....I really cant...she had to take the Gazel(?)test to enter kindergarden...and she had to take the IOWA test at the end of kindergarden. Now how she did I have no idea as I'm not included in the meetings and when my husband comes home from those meetings he's very vague about what has been said...except all the teacher's say how well behaved she is.....I do know that she was invited to attend summer school but they decided that she didnt need it, like I said her mother doesnt even think she has a speech problem let alone anything else. When I picked her up yesterday her mom said that she was excited to be going to her friends house I really wanted to ask her exactly what excited was, was it jumping up and down yelling and screaming or just asking if it was time to go yet until you're ready to pull your hair out....anyone understand what I'm trying to say...
Well hate to cut it short but he's back and its too hard for me to type and keep him out of the room...Take care....
Thank you airforcewife for your very informative post. I'm also digesting Pandabaire3 posts.
Regarding Pandabaire3 post about taking her to get her tested well I would be more than willing to do that but after I have her tested than what, I come home and say "Hey honey went and had her tested and she is AS OCD....." I really dont know her history as a child like when she started to talk, although if my memory serves me right her family said the same thing about her that she was a late bloomer....
I had said on an earlier post that she has not been diagnosed with anything..she has an IEP for speech that's it....I cant imagine someone testing her and not seeing something....I really cant...she had to take the Gazel(?)test to enter kindergarden...and she had to take the IOWA test at the end of kindergarden. Now how she did I have no idea as I'm not included in the meetings and when my husband comes home from those meetings he's very vague about what has been said...except all the teacher's say how well behaved she is.....I do know that she was invited to attend summer school but they decided that she didnt need it, like I said her mother doesnt even think she has a speech problem let alone anything else. When I picked her up yesterday her mom said that she was excited to be going to her friends house I really wanted to ask her exactly what excited was, was it jumping up and down yelling and screaming or just asking if it was time to go yet until you're ready to pull your hair out....anyone understand what I'm trying to say...
Well hate to cut it short but he's back and its too hard for me to type and keep him out of the room...Take care....
Joanne
06-29-2003, 02:39 PM
I am so sorry that I have not responded to you earlier. I was really sick and have not been on the internet in a while. I cannot imagine what you are going through. It must be so difficult to be able to see things when everyone else choses to be blinded by the problems this poor little girl is showing. I would be so angry. I know my husband (although he is supportive and trusts my decisions when it comes to our son) likes to ignore the fact that he is autstic and also holds to this dream that there will be some miracle pill that will give him back his little boy. I have a few suggestions for you . They may not be easy, but they may be worth a try. First, what about the grandparents? Maybe they will be more open to talking to your husband on your behalf? I know my mom saw the problems in Ryan long before I was willing to acknowledge them. Also, what about you going to the school's counsler? It may have to be behind your husband's back. I know it is extremely difficult to keep things from the ones we love but she/he could be beneficial. If you state your concerns, she may be willing to speak to your husband. It sounds like you can't leave things up to the school because of family that works there. The counsler may be different. You could aldo try the superintendant of schools. Maybe he/she or his administrative assistant could point you in some right direction when it comes to school. Finally, you could try her peditrician. Maybe if you voiced your opinions to her/him, they would be willing to help. You could say that maybe you see the problems because you are not as close to the problem. (Even though it sounds to me that you care for her even more that her own parents) But since she is not bloodly related to you, you don't have as much reason to feel guilt. (Sometimes psychology even works on doctors) You could also ask her pediatrician if maybe they could suggest to your husband to take her to a neurologist(sp?) (I can be a horrible speller sometimes.) That is the first person who diagnosed my son. I wasn't even looking for a diagnosis. I was just sent to make sure he wasn't having seizures. I know how hard it is to deal with having an autistic child. I cannot imagine having to fight my partner on the issue. I hope I have helped. Like I said before, maybe emphasize to everyone involved that you just want to do what you can to help. All you need to do is provide the right avenue to get to a diagnosis. Let them get upset and frustrated with the person who says to them the first time, "Your daughter is autistic", not you. I will think some more about this and see if I can come up with any other way to help. Hang in there.
Joanne
Joanne
queen
06-29-2003, 06:37 PM
Joanne
Thank you for your post..hope you are feeling better. Your insight has almost lifted a big weight off my chest, that's almost....I'm not sure what to do as we live in a very rural area where everybody knows everybody..my husband's family very influential people in the community and my family has owned a business in this small town since 1928 so those are some other issues that I have to face....The superitendent well he is an around the block kid that my husband and I both played with as children..the principle my mother in law plays cards with on Wed...and you mentioned asking his family for support well they are in as much denial as her mom and dad...sad but true....so anything I say could get back to them so I have to decide which waters I want to muddy....again thank you so much...I hope I hear from you soon.....
Thank you for your post..hope you are feeling better. Your insight has almost lifted a big weight off my chest, that's almost....I'm not sure what to do as we live in a very rural area where everybody knows everybody..my husband's family very influential people in the community and my family has owned a business in this small town since 1928 so those are some other issues that I have to face....The superitendent well he is an around the block kid that my husband and I both played with as children..the principle my mother in law plays cards with on Wed...and you mentioned asking his family for support well they are in as much denial as her mom and dad...sad but true....so anything I say could get back to them so I have to decide which waters I want to muddy....again thank you so much...I hope I hear from you soon.....
ChihuahuaLady
06-30-2003, 01:08 AM
sorry to but into your conversation about this subject, but I was just browsing around and found this and have to say something....Queen...I understand your worry, but if I may ask...has this child gone to school yet?? I am a parapro working with autistic children...and to be honest...if she is autistic...the school will (well should) tell the parents if there is anything wrong..if she has or had a teacher that is worth a crap..the teacher should be trained to know if the child is in need of a little special attention somewhere...atleast in the school I work in (that is in a small town in GA) all of the teachers are very open to watching out for signs of anything wrong or in need of help...
I hope all starts to get better for you...but as far as the parents....my kids are in middle school and are ages 12-16 (in GA I believe we keep them in middle school till 16 and high school up to 21 in a lot of cases) and most of the parents are still in denial...
I hope all starts to get better for you...but as far as the parents....my kids are in middle school and are ages 12-16 (in GA I believe we keep them in middle school till 16 and high school up to 21 in a lot of cases) and most of the parents are still in denial...
Britmum
07-01-2003, 04:41 PM
Hi Queen I have an eight year old boy who has aspergers syndrome. I just wanted to reasure you that things get better or more to the point you deal with things better. I read everything I could get my hands on about aspergers and belive me the more you read you realize that there talking about what you are going through then I started reading it to my family and after some tears and upset they realize that there was a problem. You will go through every emotion and come through it stronger. Now a year and a half on my son has improved it takes a while and its a learning process for both of us. A good book to read is Eating an Artichoke By Echo R Fling. I gave it to my sons stepdad and every page he comented on how it was like our boy. you can get it at amazonbooks.
queen
07-01-2003, 08:51 PM
Chihuahhualady/Birmum
Thank you for your posts. The more I hear the more I know I'm going to have to stand up and scream it from the roof top if I have to...If she doesnt start getting help now she'll never get any better. Now to answer some questions
Chihuahhualady
Yes she just completed Kindergarden....she has an IEP for speech that's it unless my husband is not being honest with me because what a disappointment it would be to have a child with a problem...(shameful thinking, isnt it) The teachers all say what a well behaved child she is well of course she is she dont talk and if she does you wouldnt be able to understand her if she was being definant...I dont understand WHY someone hasnt taken note of her odd behavior...if I could email you a picture of her you could see the blank look on her face, all her pictures are like that except 2 that I know of...why in the world wouldnt you think something is wrong just by the constant blank look on her face....it kills me that they can see beyond their own vanity and pride...have some pride for that little girl that you took the time to make is what I'd like to say...My 8 yr old son is very bright reading since he was like 3-4 an old soul trapped in an old mans body, but last summer I had to take him to Sylvan 2 a week all summer long to correct a reading problem that he acquired in the first grade, yes that was devastating to me but I did it by god because I didnt want him to fall behind...now I know its not as tramatic as this but it was very real to me, you know what I'm saying. I'll have to post more later...thank you all so much for lending me your ear....
Thank you for your posts. The more I hear the more I know I'm going to have to stand up and scream it from the roof top if I have to...If she doesnt start getting help now she'll never get any better. Now to answer some questions
Chihuahhualady
Yes she just completed Kindergarden....she has an IEP for speech that's it unless my husband is not being honest with me because what a disappointment it would be to have a child with a problem...(shameful thinking, isnt it) The teachers all say what a well behaved child she is well of course she is she dont talk and if she does you wouldnt be able to understand her if she was being definant...I dont understand WHY someone hasnt taken note of her odd behavior...if I could email you a picture of her you could see the blank look on her face, all her pictures are like that except 2 that I know of...why in the world wouldnt you think something is wrong just by the constant blank look on her face....it kills me that they can see beyond their own vanity and pride...have some pride for that little girl that you took the time to make is what I'd like to say...My 8 yr old son is very bright reading since he was like 3-4 an old soul trapped in an old mans body, but last summer I had to take him to Sylvan 2 a week all summer long to correct a reading problem that he acquired in the first grade, yes that was devastating to me but I did it by god because I didnt want him to fall behind...now I know its not as tramatic as this but it was very real to me, you know what I'm saying. I'll have to post more later...thank you all so much for lending me your ear....
Joanne
07-01-2003, 09:22 PM
Well, it looks like you have a lot to think about. I do want to tell you a little story about my son. Ryan started extended year services yesterday. His teacher told me she would have never known he was autistic if I had not informed her. His regular teacher also does not see Ryan as autistic. He is so great in school. Ryan seems to understand that he has to play a certain role while at school. The only reason he gets the services he gets is because of me. I have to scream and yell at these people. I have even invited them all to the house so they can see his behavior first hand. So I can understand why they might think she only needs speech therapy. That is what they have thought about Ryan for far too long. They are beginning to see him for what he really is. It only took over a year. I guess he just had a long "honeymoon". Well, good luck and hang in there. Keep pushing all of them until you get the results that you feel your step daughter deserves. The only one they are hurting is her!!
queen
07-01-2003, 10:48 PM
Thanks for sharing Joanne
I think your right, when people think of autistic they think of the worst case senerio immediately, not knowingly recognizing when there might be a problem, maybe that's what I'm going to have to do is go to her teacher and express my concerns and just hope for the best...I just hate to wait until school starts again..more lost time that could be used correcting the damage...\
I just dont know how to express my appreciation for everyone who has posted....I'm truely thankful....Maybe all of you are my angels..God Bless.
I think your right, when people think of autistic they think of the worst case senerio immediately, not knowingly recognizing when there might be a problem, maybe that's what I'm going to have to do is go to her teacher and express my concerns and just hope for the best...I just hate to wait until school starts again..more lost time that could be used correcting the damage...\
I just dont know how to express my appreciation for everyone who has posted....I'm truely thankful....Maybe all of you are my angels..God Bless.
memehegan
07-03-2003, 11:01 PM
Dear Airforce wife, I was just reading through the post and something your said about your daughter jumped out at me- you say several times she is an especially picky eater and limits her diet to only "her foods" - have you ever tried the gfcf diet- my son behaviors were very very severe- every year he became more and more pervasive and withdrawn, I was placed in a situation by soc. services becaused he was becoming so violent that I actually had to choose between allowing the school to look for residential placement for him or foster care for my older daughter to protect her from him! So you see I was desperate- also for several months the school home tutored him, he wasnt even allowed on the school premises. Then I read about the diet in Parents magazine March 2000-I read it at first because I was outraged that they would put on their cover "I cured my son from autism"- I believed at the time there was no cure- and for many there isnt- but there is a sub-group of children who actually have a digestive disorder that creates the autisitic symptoms.- in some people it is called celiac and they lack the enzymes to break down glueten and sometimes caisen protiens so they get very sick and get diareah really bad- in these autistic kids the digestive track is so weak that the protiens become bullet holes and punture the tract and seep into the blood- they are almost identical to opium and they children trip on them- opium addicts have autistic like behaviors as well, one off the markers for this is that the children become obsessive and pervasisve about only eating milks,ice cream, cherrios, cheeses- breads- all the glueten and casien products! Other markers are red red ears, excema- my son had excema behind his knees so bad - when he was a baby it was constantly cracked and bleeding, he never had diareah- something that doctors usually look for when diagnosising this-- there is a blood test- but I just set aside a weekend and cooked all unprocessed rice potato and hamburger foods- I substituted chocolate rice dream milk and rice crispies- eventually I learned most of theses foods were only low in glueten and caisen and refined the diet but I saw incredible results in four days- it was like a cloud had been lifted from my son's eyes- I got my first cuddles and I love yous. Also he was wirey and bones skinny and his hair was not soft- I suspect scince he was unable to process most of the protiens he consumed he was actually extremely malnurished! His verbal and nonverbal IQ's have both gone up 10 points - there are also over the counter digestive enzyme supplements that do wonders- and the red ears only come now when he has snuck something. Also we didnt experience it but I have read some children go through severe withdrawl the same way an addict would. My son is now 12 and entering 7th grade. I dont mean to sound pushy -but what I would have given to have understood about this diet when he was younger- maybe there wouldnt be quite so much permanent damage- good luck, and by the way all the advice you have given here is right on the money! I hope the teachers dont let this little girl slip through the cracks- if they do too long, she will eventually be labeled emotionally disturbed instead haveing needs met appropriately.-meme
~airforcewife~
07-04-2003, 02:38 AM
Hi meme! :wave:
I have heard about that and I am interested. Her doctor and I talked about it once last year and then my daughter started trying some "new" foods and the doc said to hold off and see how she does...but I think about it more and more.
In the past few months even, she has expanded "her foods" to allow a few new ones. She eats hot dogs now (plain and on a bun), string cheese, mac & cheese, broccoli, and a couple others that used to be HUGE no-no's for her. I'm so proud of her because now when she's in a decent mood, she is more willing to try new foods. We're still far from over this hurdle but we understand it and don't push the issue.
Is it hard to maintain the gfcf diet? I talked to a few moms in my area who tried it and said it was a pain but I'll try anything once! ;)
------------------
~ Proud Military Wife & Mother Of 3 Beautiful Children! ~
[This message has been edited by ~airforcewife~ (edited 07-04-2003).]
I have heard about that and I am interested. Her doctor and I talked about it once last year and then my daughter started trying some "new" foods and the doc said to hold off and see how she does...but I think about it more and more.
In the past few months even, she has expanded "her foods" to allow a few new ones. She eats hot dogs now (plain and on a bun), string cheese, mac & cheese, broccoli, and a couple others that used to be HUGE no-no's for her. I'm so proud of her because now when she's in a decent mood, she is more willing to try new foods. We're still far from over this hurdle but we understand it and don't push the issue.
Is it hard to maintain the gfcf diet? I talked to a few moms in my area who tried it and said it was a pain but I'll try anything once! ;)
------------------
~ Proud Military Wife & Mother Of 3 Beautiful Children! ~
[This message has been edited by ~airforcewife~ (edited 07-04-2003).]
memehegan
07-04-2003, 01:45 PM
It insnt so hard once you get used to it and know where and what is 'safe' foods, like I said I never really intended to stay on it with my son but the improvement was so dramatic and immediate, and the better he gets the more obvious it is when he does eat something his system cant process. The first week I just sat down and planned menus that didnt include wheat and milk for four days -didnt even tell my family- the only thing I couldnt fake was the milk-I had to tell my son about that- but to ease into it I bought the chocolate flavored- now its even easier because you can get some pretty good natural chocolate soy milks in the fridge section- I delute them 1/2 and 1/2 with rice dream milk (which MAY contain traces of glueten) but it tastes much much better than soy to myself and my son- I did rice crispies - (also not really ok forever but definitely in the begining to see if theres a difference) -I used the rice cripies in meatloaf and mashed potatos , we did taco salad with corn tortillas, hamburgers and french fries, chicken and rice and peas, and as soon as the gluetens and caisens were out of his system he wasnt rigid about eating new foods at all! If you met him today (and your wernt asking him to clean or do reading/writing) you would never never know he was ever autistic or had behavior problems! It is nothing short of a miricle and he grew so fast on the diet- he must have been just starving to death before because his body couldnt use any of the massive amounts of milk and wheat protiens it consumed!- Its a little more complicated now for us because he is also corn products, hydrogenated oil, sodium nitrates, and chocolate, and peanuts. I hope you give it a try- I am sure if the results for us werent so amazing we never would have stayed with it, I know some who feel they see minor improvements but I am talking amazing eye contact and non stop conversation and like I said- really my first ever ever ever I love yous AND daily hugs and cuddles from day 4 on- he was eight and had eight years to make up!!!-meme
Joanne
07-17-2003, 10:33 PM
Dear Queen,
I was just on the message board an thought I would drop you a line to see how things were going. Please let us know.
Joanne
[This message has been edited by Joanne (edited 07-17-2003).]
I was just on the message board an thought I would drop you a line to see how things were going. Please let us know.
Joanne
[This message has been edited by Joanne (edited 07-17-2003).]
queen
08-08-2003, 10:55 AM
Joanne thanks for the concern, read the most recent post from Desperate for info....things are looking up..