Re: Re: mom of daughter who scratches herself. . . .. .

[Guest guest]

We have been doing this for a while and I completely understand. I am

writing a book right now of our journey. It may take years to complete

but our life is really crazy. my daughtter has autism and I do biomed

to help her which is many supplements and vitamins every day which she

hates. She has sensory processing disorder to all senses so if things

are too loud, soft, wet, sticky, smelly bright and so on she freaks

out. She has skin rashes like you wouldn't believe, she is super

constipated to the point of screaming to poop. Also her head has not

grown in almost 2 years so we think she has atypical rett syndrom. It

is a horrible disease where some children lose the abilty to walk,

talk, and eat by mouth. We are scared. She can regress or lose

abilites at any time before age 10. she also may not even have it so

we don't want to drive our selves crazy. nne can only eat store

bought baby food. her mouth won't allow anything else. she pukes if

it has any texture. She is almost 4. She will not potty train. I had

her genetically tested for rett and it came back negative but atypical

will not show on a test. We had her throat scoped and she has an inlet

patch that the dr said she can not feel but I think she feels it. It

might give her the feeling of somthing caught in her throat all the

time. It is inoperable. She may never potty train, eat normally, and

may regress but the worst of her is her moods. She is crazy mean

sometimes. She hites me and her self and it is so hard to watch. She

has rage. It is improvign right now with the b12 shots but that is

another story. Oh, also she was completely mute and was not going to

talk. really! We have freinds with kids with severe autism that are

6, 12, 11, and 3 that still do not talk at all. Not even mama. I

intervened with special meds to help talking and she did. She exploded

the next day with full sentences and then one month later started

reading on her own! She is very smart and sweet. She doesn't like to

be touched at all but recently has allowed me to snuggle her a little.

She is not empathetic and is very selfish. She is an only child and is

very spoiled. She yells at me to buy her a new toy every day. She

says those toys are old and no good take them away! she is constantly

hurting my feelings but recently I have taught her when she hits me it

hurts. it als hurts mommy feelings and now sometimes she will hit then

wait and say "I am being mean to mommy" and she will on her own say"I

am sorry mommy" I tell her right away I forgive you and it is all

better now. I know that might be weird to teach taht a sorry makes it

perfect because she shouldn't hit at all but sometimes she HAS to. I

am trying not to overreact to it and that has been helping. I am

married but it feels like I am on this journey alone because the

disapline is on me and really she is only mean to me. We did not plan

this when we wanted a baby and truthfully I feel guilty for bringing

her to life. I feel like we made a mistake. I know this is not to be

spoken but it is true for me. she seems to unhappy I feel so bad for

having her. She isn't always mean or unhappy but those times consume

me. It is hard to forget. My first husband used to abuse me A LOT so

now when my little child does it I have flash backs. Great huh? yeah

I have to remind myself she is sick with autism and doesnt fully

understand why she is doing things or how to stop them I just try to be

calm and teach her to calm her body and to breath. I do love her a

lot. I love me more. I am trying to see me as me and not just as her

mom. I feel like I have failed as her mom a lot of the time so that

can make me feel like I have failed at life. If we are seperate it

isnt' as personal when she is mean. She is just mean sometimes no

matter how good I am she just is. I still worry about rett and really

nothing is worse to me. When I see her run wobbly and her balance is

terrible like that of a one year old I fear it is coming. I also cry

for the things that will be gone. To have her words finally

come out to have them disapear again will be truely tragic and unfair.

It has all been so hard raising her. So hard on me right.?? No. the

truth is it has been hard on her too. She doesn't want to be different

and needs the most love because of her disabilities and I am such a

mean mommy that I yell at her sometimes. I know it must look awful and

I feel such terrible guilt because she is so disabled but at the same

time she is not. she is smart and she does know how to control some

things so when she attacks me I get so furious with the healthy side of

her. She is like 2 children in one one with autism and onw without.

There are moments you would never know and most people looking at her

don't know unless she gets exctied and flaps her arms and humms really

loudly. My life is a joke. For real. We have chosen to poke fun a

little and try to laugh at how silly things get sometimes. I am a

super emotional person so I can not just ignore my feelings I hav e to

really feel them. and i do everyday. A rainbow of feelings wash over

me, I just have to decide wish one to remember and keep. I try not to

focus on the crappy moments as much even though they are there.

Everyone has them it is just not as cool to talk about it with other

moms so most moms are show offy and talk abou thow perfect their kids

are. Not true there is always something. I hope you can be peaceful

with the way your life is. It may not be perfect but it is yours.

I'm not sure if lying is a common trait among aspie's, but I do know that my son lies constantly. He makes up excuse for ANY bad behavior. Everything is always someone else's fault. It drives me a bit crazy. Sometimes I really think that he believes his lies and he even screams at the top of his lungs (which is totally out of character for him). Not sure what to do about it, I won't let him get away with lying, but I hate to stress him out. Sounds like we are having the same difficulties!

“Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.†- Steve Jobs

[Guest guest]

Hi ,

How old is your daugther?

My my girl use to choked with food and water until she was seven years old. She got early intervention and they got some therapy for her.

Shen she grew up older I train her to eat very slowly.

She sees a gastroenterologist who made some testing for that and there is also therapy for that problem.

I also took her to see an eyes, nose and troat doctor, a neurologist, a pulmonary doctor, a psyquatry, a therapy, an ortophaeda, etc.

A team of doctor treat her and I make sure that for each visit the medical records are transfer to each one of them.

Have you taken her to see a gastroenterologist? My girl had the same problems of constipation. When the medicine did not help I got her in a special diet for her seizure and for ther acid reflux.

Sometimes my girl will have also regression, where it looks as if she is losing her skills. The therapist says that it is normal. Her skills come back to her again after a brief regression.

I understand how you feel, sometimes I feel the same.

My daugther started to respond to treatment when she was seven. Keep helping her and hopefully everything will comes together....that happens to me...

Did you doctor check for seizures? sometimes seizures cause personality problems.

Re: ( ) Re: mom of daughter who scratches herself. . . .. .We have been doing this for a while and I completely understand. I amwriting a book right now of our journey. It may take years to completebut our life is really crazy. my daughtter has autism and I do biomedto help her which is many supplements and vitamins every day which shehates. She has sensory processing disorder to all senses so if thingsare too loud, soft, wet, sticky, smelly bright and so on she freaksout. She has skin rashes like you wouldn't believe, she is superconstipated to the point of screaming to poop. Also her head has notgrown in almost 2 years so we think she has atypical rett syndrom. Itis a horrible disease where some children lose the abilty to walk,talk, and eat by mouth. We are scared. She can regress or loseabilites at any time before age 10. she also may not even have it sowe don't want to drive our selves crazy. nne can only eat storebought baby food. her mouth won't allow anything else. she pukes ifit has any texture. She is almost 4. She will not potty train. I hadher genetically tested for rett and it came back negative but atypicalwill not show on a test. We had her throat scoped and she has an inletpatch that the dr said she can not feel but I think she feels it. Itmight give her the feeling of somthing caught in her throat all thetime. It is inoperable. She may never potty train, eat normally, andmay regress but the worst of her is her moods. She is crazy meansometimes. She hites me and her self and it is so hard to watch. Shehas rage. It is improvign right now with the b12 shots but that isanother story. Oh, also she was completely mute and was not going totalk. really! We have freinds with kids with severe autism that are6, 12, 11, and 3 that still do not talk at all. Not even mama. Iintervened with special meds to help talking and she did. She explodedthe next day with full sentences and then one month later startedreading on her own! She is very smart and sweet. She doesn't like tobe touched at all but recently has allowed me to snuggle her a little. She is not empathetic and is very selfish. She is an only child and isvery spoiled. She yells at me to buy her a new toy every day. Shesays those toys are old and no good take them away! she is constantlyhurting my feelings but recently I have taught her when she hits me ithurts. it als hurts mommy feelings and now sometimes she will hit thenwait and say "I am being mean to mommy" and she will on her own say"Iam sorry mommy" I tell her right away I forgive you and it is allbetter now. I know that might be weird to teach taht a sorry makes itperfect because she shouldn't hit at all but sometimes she HAS to. Iam trying not to overreact to it and that has been helping. I ammarried but it feels like I am on this journey alone because thedisapline is on me and really she is only mean to me. We did not planthis when we wanted a baby and truthfully I feel guilty for bringingher to life. I feel like we made a mistake. I know this is not to bespoken but it is true for me. she seems to unhappy I feel so bad forhaving her. She isn't always mean or unhappy but those times consumeme. It is hard to forget. My first husband used to abuse me A LOT sonow when my little child does it I have flash backs. Great huh? yeahI have to remind myself she is sick with autism and doesnt fullyunderstand why she is doing things or how to stop them I just try to becalm and teach her to calm her body and to breath. I do love her alot. I love me more. I am trying to see me as me and not just as hermom. I feel like I have failed as her mom a lot of the time so thatcan make me feel like I have failed at life. If we are seperate itisnt' as personal when she is mean. She is just mean sometimes nomatter how good I am she just is. I still worry about rett and reallynothing is worse to me. When I see her run wobbly and her balance isterrible like that of a one year old I fear it is coming. I also cryfor the things that will be gone. To have her words finallycome out to have them disapear again will be truely tragic and unfair. It has all been so hard raising her. So hard on me right.?? No. thetruth is it has been hard on her too. She doesn't want to be differentand needs the most love because of her disabilities and I am such amean mommy that I yell at her sometimes. I know it must look awful andI feel such terrible guilt because she is so disabled but at the sametime she is not. she is smart and she does know how to control somethings so when she attacks me I get so furious with the healthy side ofher. She is like 2 children in one one with autism and onw without. There are moments you would never know and most people looking at herdon't know unless she gets exctied and flaps her arms and humms reallyloudly. My life is a joke. For real. We have chosen to poke fun alittle and try to laugh at how silly things get sometimes. I am asuper emotional person so I can not just ignore my feelings I hav e toreally feel them. and i do everyday. A rainbow of feelings wash overme, I just have to decide wish one to remember and keep. I try not tofocus on the crappy moments as much even though they are there. Everyone has them it is just not as cool to talk about it with othermoms so most moms are show offy and talk abou thow perfect their kidsare. Not true there is always something. I hope you can be peacefulwith the way your life is. It may not be perfect but it is yours. I'm not sure if lying is a common trait among aspie's, but I do know that my son lies constantly. He makes up excuse for ANY bad behavior. Everything is always someone else's fault. It drives me a bit crazy. Sometimes I really think that he believes his lies and he even screams at the top of his lungs (which is totally out of character for him). Not sure what to do about it, I won't let him get away with lying, but I hate to stress him out. Sounds like we are having the same difficulties! “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do.†- Steve Jobs

[Guest guest]

We have seen a gastroenterologist among many others and she was in feeding therapy but she is too autistic to understand. She wants to not be here. she doesn't want to eat or poop or anything. she doesn't have most of the instincts we have. We are still trying to work with her to our best though. We did siezure testing and it came back negative. I'm not sure if lying is a common trait among aspie's, but I do know that my son lies constantly. He makes up excuse

for ANY bad behavior. Everything is always someone else's fault. It drives me a bit crazy. Sometimes I really think that he believes his lies and he even screams at the top of his lungs (which is totally out of character for him). Not sure what to do about it, I won't let him get away with lying, but I hate to stress him out. Sounds like we are having the same difficulties! “Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy

enough to think that they can change the world, are the ones who do.†- Steve Jobs