New here... (long post :- )

[Guest guest]

Hello

I am searching for info. and insight into AS because I think my 4 1/2

year old daughter and my husband both have AS. I say I " think "

because I have researched their behavior (or misbehavior) traits and

AS information nearly covers all of them. We have an appointment

with a very well respected neurologist on Dec. 22 to have my daughter

evaluated, but I thought it would be nice to talk to people who know

about AS before I go to the appointment.

I had complete placenta previa with her and she was born slightly

early (35 weeks), but underdeveloped. She was in the NICU for 4

weeks b/c of fluid in the lungs, underdeveloped lungs, digestion

problems, and failure to gain weight. She had numerous problems

later in her first year- delayed everything, hearing loss due to

excess fluid in her ears, torticolis, chronic constipation, and low

muscle enzyme (so they tell me). The Drs said she was just delayed

due to prematurity and to give her time to catch up. They were right

for the most part, but I always had this feeling that she was

not " all there " even though she was developing well- just delayed. I

asked several Drs and specialists if they thought she could be

autistic, but they always said she couldn't be autistic b/c she

enjoyed interaction with others, held eye contact, and was

functioning well. I let it go for a while, and agreed with

the " experts " because I couldn't pin-point anything in particular.

Another cause of concern came recently when my daughter had a

regression in toilet training (5 monthes ago she started wetting the

bed at night, and then during the day occassionally, and had worsened

to the point that she would wet her pants 4+ times per day). A

friend of mine mentioned possible seizure activity, and my research

began there. I often find her sitting with a blank stare and then

saying she has wet her pants and used to think she was concentrating

on wetting herself, but now I believe she is having petit mal

seizures.

These are the things I see in her that make me believe she has AS,

please tell e what you think- honestly.

Ever since she was little (about 18-24 mnth) she has had an

oversensitivity to clothes touching her stomach- she would scream

like I was stabbing her when I pulled up her pants to the belly-

button (she no longer screams, but she always pulls her pants down to

her hips), seatbelts were another item of contention and were ALWAYS

to tight even if they were as lose as safely possible. She has always

had a difficult time controlling the volume of her voice, covers her

ears and often says things are to loud, does not understand that her

1 year old brother is a baby (I have a 7 years old daughter who was 2

1/2 when our possible AS daughter was born and at her age she

understood her sister was a baby), she repeats herself over and over

again often the answer to her question/statement has been given, has

a difficult time telling a story or talking on the phone, has a very

hard time learning from consequences and is often corrected for the

same thing many times per day, and finds it difficult to deal with

her emotions.

Aside from these things and some others, she seems normal in her

interactions with other children slightly younger than her (most of

her friends are 3-4 years), and she adores her older sister. She is

loving, but only when it is her idea and is extremely smart and

funny. People do not easily notice her peculiarness at first glance,

but over time she does set herself apart from others. I don't want

to " label " her and cause detriment, but I don't want to ignore her

unusual behavior anymore and continue thinking she will " grow out of

it " like the " experts " tell me.

From your experience, what would you make of her behavior(s)? Is it

like the Drs say, will she just grow out of it? Do your children

exhibit the same behaviors? Thank you for taking the time to read

this long post-

Sincerely,

e

[Guest guest]

My son often repeats himself, is over active ( HYPER), and he says stuff till the answer is given. Iwas told he had quirks, that some he would grow out of, but he DOES NOT DISPLAY THESE AT SCHOOL, only at home.

New here... (long post :- )

Hello I am searching for info. and insight into AS because I think my 4 1/2 year old daughter and my husband both have AS. I say I "think" because I have researched their behavior (or misbehavior) traits and AS information nearly covers all of them. We have an appointment with a very well respected neurologist on Dec. 22 to have my daughter evaluated, but I thought it would be nice to talk to people who know about AS before I go to the appointment. I had complete placenta previa with her and she was born slightly early (35 weeks), but underdeveloped. She was in the NICU for 4 weeks b/c of fluid in the lungs, underdeveloped lungs, digestion problems, and failure to gain weight. She had numerous problems later in her first year- delayed everything, hearing loss due to excess fluid in her ears, torticolis, chronic constipation, and low muscle enzyme (so they tell me). The Drs said she was just delayed due to prematurity and to give her time to catch up. They were right for the most part, but I always had this feeling that she was not "all there" even though she was developing well- just delayed. I asked several Drs and specialists if they thought she could be autistic, but they always said she couldn't be autistic b/c she enjoyed interaction with others, held eye contact, and was functioning well. I let it go for a while, and agreed with the "experts" because I couldn't pin-point anything in particular. Another cause of concern came recently when my daughter had a regression in toilet training (5 monthes ago she started wetting the bed at night, and then during the day occassionally, and had worsened to the point that she would wet her pants 4+ times per day). A friend of mine mentioned possible seizure activity, and my research began there. I often find her sitting with a blank stare and then saying she has wet her pants and used to think she was concentrating on wetting herself, but now I believe she is having petit mal seizures. These are the things I see in her that make me believe she has AS, please tell e what you think- honestly.Ever since she was little (about 18-24 mnth) she has had an oversensitivity to clothes touching her stomach- she would scream like I was stabbing her when I pulled up her pants to the belly- button (she no longer screams, but she always pulls her pants down to her hips), seatbelts were another item of contention and were ALWAYS to tight even if they were as lose as safely possible. She has always had a difficult time controlling the volume of her voice, covers her ears and often says things are to loud, does not understand that her 1 year old brother is a baby (I have a 7 years old daughter who was 2 1/2 when our possible AS daughter was born and at her age she understood her sister was a baby), she repeats herself over and over again often the answer to her question/statement has been given, has a difficult time telling a story or talking on the phone, has a very hard time learning from consequences and is often corrected for the same thing many times per day, and finds it difficult to deal with her emotions. Aside from these things and some others, she seems normal in her interactions with other children slightly younger than her (most of her friends are 3-4 years), and she adores her older sister. She is loving, but only when it is her idea and is extremely smart and funny. People do not easily notice her peculiarness at first glance, but over time she does set herself apart from others. I don't want to "label" her and cause detriment, but I don't want to ignore her unusual behavior anymore and continue thinking she will "grow out of it" like the "experts" tell me. From your experience, what would you make of her behavior(s)? Is it like the Drs say, will she just grow out of it? Do your children exhibit the same behaviors? Thank you for taking the time to read this long post- Sincerely, e

[Guest guest]

Wow e,

A lot of the things you said remind me of my son, Cameron. He turned 4 in September. Cameron has not been diagnosed with anything referring to his behavior. We spent a year with a neurologist only to have him say that he was sending us to a behavior specialist. Just a heads up there. I know some people get a diagnosis from the neurologist, but we sure didn't. Might want to save yourself some time and get an appointment with a developmental pediatrician or behavior specialist. Just in case. But definitely keep the appt. with the neuro, because he'll want to do an EEG to check for those seizures. As far as her behaviors, I think you are on the right track. It sounds like she definitely has some sensory integration issues. Anyway, you have come to the right place for support- this is a GREAT group! Good luck with your appt. and let us know how it goes.

Anne

-- New here... (long post :- )

Hello I am searching for info. and insight into AS because I think my 4 1/2 year old daughter and my husband both have AS. I say I "think" because I have researched their behavior (or misbehavior) traits and AS information nearly covers all of them. We have an appointment with a very well respected neurologist on Dec. 22 to have my daughter evaluated, but I thought it would be nice to talk to people who know about AS before I go to the appointment. I had complete placenta previa with her and she was born slightly early (35 weeks), but underdeveloped. She was in the NICU for 4 weeks b/c of fluid in the lungs, underdeveloped lungs, digestion problems, and failure to gain weight. She had numerous problems later in her first year- delayed everything, hearing loss due to excess fluid in her ears, torticolis, chronic constipation, and low muscle enzyme (so they tell me). The Drs said she was just delayed due to prematurity and to give her time to catch up. They were right for the most part, but I always had this feeling that she was not "all there" even though she was developing well- just delayed. I asked several Drs and specialists if they thought she could be autistic, but they always said she couldn't be autistic b/c she enjoyed interaction with others, held eye contact, and was functioning well. I let it go for a while, and agreed with the "experts" because I couldn't pin-point anything in particular. Another cause of concern came recently when my daughter had a regression in toilet training (5 monthes ago she started wetting the bed at night, and then during the day occassionally, and had worsened to the point that she would wet her pants 4+ times per day). A friend of mine mentioned possible seizure activity, and my research began there. I often find her sitting with a blank stare and then saying she has wet her pants and used to think she was concentrating on wetting herself, but now I believe she is having petit mal seizures. These are the things I see in her that make me believe she has AS, please tell e what you think- honestly.Ever since she was little (about 18-24 mnth) she has had an oversensitivity to clothes touching her stomach- she would scream like I was stabbing her when I pulled up her pants to the belly- button (she no longer screams, but she always pulls her pants down to her hips), seatbelts were another item of contention and were ALWAYS to tight even if they were as lose as safely possible. She has always had a difficult time controlling the volume of her voice, covers her ears and often says things are to loud, does not understand that her 1 year old brother is a baby (I have a 7 years old daughter who was 2 1/2 when our possible AS daughter was born and at her age she understood her sister was a baby), she repeats herself over and over again often the answer to her question/statement has been given, has a difficult time telling a story or talking on the phone, has a very hard time learning from consequences and is often corrected for the same thing many times per day, and finds it difficult to deal with her emotions. Aside from these things and some others, she seems normal in her interactions with other children slightly younger than her (most of her friends are 3-4 years), and she adores her older sister. She is loving, but only when it is her idea and is extremely smart and funny. People do not easily notice her peculiarness at first glance, but over time she does set herself apart from others. I don't want to "label" her and cause detriment, but I don't want to ignore her unusual behavior anymore and continue thinking she will "grow out of it" like the "experts" tell me. From your experience, what would you make of her behavior(s)? Is it like the Drs say, will she just grow out of it? Do your children exhibit the same behaviors? Thank you for taking the time to read this long post- Sincerely, e

[Guest guest]

Yesterday we put up or Christmas tree, and Cameron found one of the ornaments with his name on it. Suddenly over my parents, my sister, and the radio, I hear, "C-A-M-E-R-O-N" over and over again, he was spelling his name. "C-A-M-E-R-O-N C-A-M-E-R-O-N C-A-M-E-R-O-N" It was cute, but pretty typical "Cameron behavior" for him to sit there and repeat repeat repeat!

Anne

-- Re: New here... (long post :- )

My son often repeats himself, is over active ( HYPER), and he says stuff till the answer is given. Iwas told he had quirks, that some he would grow out of, but he DOES NOT DISPLAY THESE AT SCHOOL, only at home.

New here... (long post :- )

Hello I am searching for info. and insight into AS because I think my 4 1/2 year old daughter and my husband both have AS. I say I "think" because I have researched their behavior (or misbehavior) traits and AS information nearly covers all of them. We have an appointment with a very well respected neurologist on Dec. 22 to have my daughter evaluated, but I thought it would be nice to talk to people who know about AS before I go to the appointment. I had complete placenta previa with her and she was born slightly early (35 weeks), but underdeveloped. She was in the NICU for 4 weeks b/c of fluid in the lungs, underdeveloped lungs, digestion problems, and failure to gain weight. She had numerous problems later in her first year- delayed everything, hearing loss due to excess fluid in her ears, torticolis, chronic constipation, and low muscle enzyme (so they tell me). The Drs said she was just delayed due to prematurity and to give her time to catch up. They were right for the most part, but I always had this feeling that she was not "all there" even though she was developing well- just delayed. I asked several Drs and specialists if they thought she could be autistic, but they always said she couldn't be autistic b/c she enjoyed interaction with others, held eye contact, and was functioning well. I let it go for a while, and agreed with the "experts" because I couldn't pin-point anything in particular. Another cause of concern came recently when my daughter had a regression in toilet training (5 monthes ago she started wetting the bed at night, and then during the day occassionally, and had worsened to the point that she would wet her pants 4+ times per day). A friend of mine mentioned possible seizure activity, and my research began there. I often find her sitting with a blank stare and then saying she has wet her pants and used to think she was concentrating on wetting herself, but now I believe she is having petit mal seizures. These are the things I see in her that make me believe she has AS, please tell e what you think- honestly.Ever since she was little (about 18-24 mnth) she has had an oversensitivity to clothes touching her stomach- she would scream like I was stabbing her when I pulled up her pants to the belly- button (she no longer screams, but she always pulls her pants down to her hips), seatbelts were another item of contention and were ALWAYS to tight even if they were as lose as safely possible. She has always had a difficult time controlling the volume of her voice, covers her ears and often says things are to loud, does not understand that her 1 year old brother is a baby (I have a 7 years old daughter who was 2 1/2 when our possible AS daughter was born and at her age she understood her sister was a baby), she repeats herself over and over again often the answer to her question/statement has been given, has a difficult time telling a story or talking on the phone, has a very hard time learning from consequences and is often corrected for the same thing many times per day, and finds it difficult to deal with her emotions. Aside from these things and some others, she seems normal in her interactions with other children slightly younger than her (most of her friends are 3-4 years), and she adores her older sister. She is loving, but only when it is her idea and is extremely smart and funny. People do not easily notice her peculiarness at first glance, but over time she does set herself apart from others. I don't want to "label" her and cause detriment, but I don't want to ignore her unusual behavior anymore and continue thinking she will "grow out of it" like the "experts" tell me. From your experience, what would you make of her behavior(s)? Is it like the Drs say, will she just grow out of it? Do your children exhibit the same behaviors? Thank you for taking the time to read this long post- Sincerely, e

[Guest guest]

Hi e,

I read your long post and don't have too much to say other than we are here to listen. I think it is a good idea you are taking your daughter to be checked. You say you wonder if she may be having seizures on account of her wetting her pants. I have a son who is 40 now who has had seizures all of his life, he started with petit mal and went on to grand mal. Mostly what I noticed when his seizures first started when he was 2 or so was his arms would go stiff in front of him for just a few seconds. This wasn't so bad if he was sitting down but if he was walking they would pitch him backwards onto the floor and he would bump his head.

You have explained that your daughter has been through a lot in her short life, and it would seem that she could have some problems with that. I think the first step doctors always aim for is hoping the child will outgrow it, or catch up in their development, etc. My son was fine before these seizures started, had developed pretty much just like his two older brothers had. But once the seizures started they tried to control them with drugs, and then he had lots of problems after that and the seizures got worse. He was finally diagnosed "retarded" but I came to realize over the years that most of his behaviors have been autistic.

Anyway the neurologist will no doubt want an EEG and other tests done to see if there are any problems in her brain. They look for the worst things, and with my son they have never found anything, but that is good. We still don't know to this day what is wrong with him. Just that his brain is evidentially damaged for some reason, he has seizures, and he cannot take care of himself, and needs full assistance in all things.

We have found that love is the answer in the long run, it is all that really counts when everything else fails. With us there was not cure, but we have survived anyway, which is a good thing.

Right now I take care of three grandkids while my daughter works, and they are so cute. Just put the baby down for a nap, he is almost 5 months, and is 4 and watching t.v. and Sierra is in school, she is 7.

Sweet little kids all!

Carolyn in Oregon

New here... (long post :- )

Hello I am searching for info. and insight into AS because I think my 4 1/2 year old daughter and my husband both have AS. I say I "think" because I have researched their behavior (or misbehavior) traits and AS information nearly covers all of them. We have an appointment with a very well respected neurologist on Dec. 22 to have my daughter evaluated, but I thought it would be nice to talk to people who know about AS before I go to the appointment. I had complete placenta previa with her and she was born slightly early (35 weeks), but underdeveloped. She was in the NICU for 4 weeks b/c of fluid in the lungs, underdeveloped lungs, digestion problems, and failure to gain weight. She had numerous problems later in her first year- delayed everything, hearing loss due to excess fluid in her ears, torticolis, chronic constipation, and low muscle enzyme (so they tell me). The Drs said she was just delayed due to prematurity and to give her time to catch up. They were right for the most part, but I always had this feeling that she was not "all there" even though she was developing well- just delayed. I asked several Drs and specialists if they thought she could be autistic, but they always said she couldn't be autistic b/c she enjoyed interaction with others, held eye contact, and was functioning well. I let it go for a while, and agreed with the "experts" because I couldn't pin-point anything in particular. Another cause of concern came recently when my daughter had a regression in toilet training (5 monthes ago she started wetting the bed at night, and then during the day occassionally, and had worsened to the point that she would wet her pants 4+ times per day). A friend of mine mentioned possible seizure activity, and my research began there. I often find her sitting with a blank stare and then saying she has wet her pants and used to think she was concentrating on wetting herself, but now I believe she is having petit mal seizures. These are the things I see in her that make me believe she has AS, please tell e what you think- honestly.Ever since she was little (about 18-24 mnth) she has had an oversensitivity to clothes touching her stomach- she would scream like I was stabbing her when I pulled up her pants to the belly- button (she no longer screams, but she always pulls her pants down to her hips), seatbelts were another item of contention and were ALWAYS to tight even if they were as lose as safely possible. She has always had a difficult time controlling the volume of her voice, covers her ears and often says things are to loud, does not understand that her 1 year old brother is a baby (I have a 7 years old daughter who was 2 1/2 when our possible AS daughter was born and at her age she understood her sister was a baby), she repeats herself over and over again often the answer to her question/statement has been given, has a difficult time telling a story or talking on the phone, has a very hard time learning from consequences and is often corrected for the same thing many times per day, and finds it difficult to deal with her emotions. Aside from these things and some others, she seems normal in her interactions with other children slightly younger than her (most of her friends are 3-4 years), and she adores her older sister. She is loving, but only when it is her idea and is extremely smart and funny. People do not easily notice her peculiarness at first glance, but over time she does set herself apart from others. I don't want to "label" her and cause detriment, but I don't want to ignore her unusual behavior anymore and continue thinking she will "grow out of it" like the "experts" tell me. From your experience, what would you make of her behavior(s)? Is it like the Drs say, will she just grow out of it? Do your children exhibit the same behaviors? Thank you for taking the time to read this long post- Sincerely, e

[Guest guest]

e,

Actually, your child almost exactly fits the profile for a child who

was had complications right after birth! Many of the kiddos I have

worked with and whose parents had pregnancy complications prior to,

during, or after birth had kids that were underdeveloped and were

termed " failure to thrive " . Many had significant delays and trouble

hearing/seeing. Almost all had sensory integration issues and were

hyper sensitive to certain textures. Many also had trouble with the

suck/swollow/breath as well as the gag reflex... Several had seizure

activity, some visible and some detected only by the neurologist.

Seizure activity can delay or reverse developmental milestones,

because it can cause temporary or perminant memory loss (especially

on tasks that are still in short term memory or newly learned

skills). Many of these kiddos had symptoms that shaddow AS or

autistic spectrum children, but most either outgrew their symptoms or

the symptoms were controlled through seizure meds, which also allowed

them to catch up developmentally.

Though I know it is hard right now to not know what is causing these

delays and that you really want her to move forward, your doctors

need to be very careful in diagnosing her in order to make sure that

the treatments/meds she is given will help the problem rather than

masking it!!!

Good luck and take care!!!

~hugs~

Rabecca

[Guest guest]

My son has some similarities with what you describe. He's only 3 (4 as of tomorrow) and has horrific meltdowns/temper tantrums, shuts down when overstimulated (literally will melt against me, the chair, or in a case where he's walking, the ground..no matter where we are..sometimes he'll strip there too), has sensory issues (certain textures of food, such as meat..fingerpaint, wet sand, mud are no-nos..shirts all 'hurt' him, as do socks and some things around his waiste..doesn't like his head touched/washed/hair cut..little bumps/brushes by others all 'hurt'), doesn't have great eye-contact, plays nearby others but not good at playing with them, is extremely sensitive, very smart/verbal, likes to line up his toys, has severe rigid behaviors (specific cup, spoon, straw, placement of items, stuffed animals with him at all times, etc.), has a small diet of things he'll eat without spitting out, and other odd things. No two ASD children are alike, from what I've learned in my very limited time of knowing this is even what we were dealing with.

One really good book I'm reading right now is "Asperger's Syndrome in Young Children," published 2004, by Laurie Leventhal-Belfer and Cassandra Coe. It covers so many of the real feelings parents have and gives real examples..it's not so 'medical speak' as to lose you, and gives you real ideas on how to deal with the situations you experience. I'm not done yet, but already it's made me feel much better, like I have an idea now of what we're dealing with. There's so much to be said for that.

Donna

New here... (long post :- )

Hello I am searching for info. and insight into AS because I think my 4 1/2 year old daughter and my husband both have AS. I say I "think" because I have researched their behavior (or misbehavior) traits and AS information nearly covers all of them. We have an appointment with a very well respected neurologist on Dec. 22 to have my daughter evaluated, but I thought it would be nice to talk to people who know about AS before I go to the appointment. I had complete placenta previa with her and she was born slightly early (35 weeks), but underdeveloped. She was in the NICU for 4 weeks b/c of fluid in the lungs, underdeveloped lungs, digestion problems, and failure to gain weight. She had numerous problems later in her first year- delayed everything, hearing loss due to excess fluid in her ears, torticolis, chronic constipation, and low muscle enzyme (so they tell me). The Drs said she was just delayed due to prematurity and to give her time to catch up. They were right for the most part, but I always had this feeling that she was not "all there" even though she was developing well- just delayed. I asked several Drs and specialists if they thought she could be autistic, but they always said she couldn't be autistic b/c she enjoyed interaction with others, held eye contact, and was functioning well. I let it go for a while, and agreed with the "experts" because I couldn't pin-point anything in particular. Another cause of concern came recently when my daughter had a regression in toilet training (5 monthes ago she started wetting the bed at night, and then during the day occassionally, and had worsened to the point that she would wet her pants 4+ times per day). A friend of mine mentioned possible seizure activity, and my research began there. I often find her sitting with a blank stare and then saying she has wet her pants and used to think she was concentrating on wetting herself, but now I believe she is having petit mal seizures. These are the things I see in her that make me believe she has AS, please tell e what you think- honestly.Ever since she was little (about 18-24 mnth) she has had an oversensitivity to clothes touching her stomach- she would scream like I was stabbing her when I pulled up her pants to the belly- button (she no longer screams, but she always pulls her pants down to her hips), seatbelts were another item of contention and were ALWAYS to tight even if they were as lose as safely possible. She has always had a difficult time controlling the volume of her voice, covers her ears and often says things are to loud, does not understand that her 1 year old brother is a baby (I have a 7 years old daughter who was 2 1/2 when our possible AS daughter was born and at her age she understood her sister was a baby), she repeats herself over and over again often the answer to her question/statement has been given, has a difficult time telling a story or talking on the phone, has a very hard time learning from consequences and is often corrected for the same thing many times per day, and finds it difficult to deal with her emotions. Aside from these things and some others, she seems normal in her interactions with other children slightly younger than her (most of her friends are 3-4 years), and she adores her older sister. She is loving, but only when it is her idea and is extremely smart and funny. People do not easily notice her peculiarness at first glance, but over time she does set herself apart from others. I don't want to "label" her and cause detriment, but I don't want to ignore her unusual behavior anymore and continue thinking she will "grow out of it" like the "experts" tell me. From your experience, what would you make of her behavior(s)? Is it like the Drs say, will she just grow out of it? Do your children exhibit the same behaviors? Thank you for taking the time to read this long post- Sincerely, e