Re: to mom of daughter who scratches

[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 just started back on Zoloft about 10 days ago, so I know that it's

going to kick in here soon. There are alot of other "stressors" in our

life right now, and I know that it will get better. The ups and downs

of parenting, right? It makes me seriously question my abilities (re:

subject lol). He has become so agressive... .and just mean. Yesterday,

he was yelling out the door that his older brother was fat. He bought a

flashlight at a garage sale on Saturday, and it has a radio and an

emergency siren on it that is really loud. I try and let him have stuff

like that, because it's his passion - anything mechanical. He kept

making the thing beep....over and over and over. I asked him to stop,

tried explaining that it was for emergencies. Explained the "never cry

wolf" thing....that didn't work. Then, took the approach that the

neighbors probably didn't want to hear it all day, and he responded

yelling "I have only been playing with it for 3 hours, I'm not talking

to you! Get out of my room!"! I then said that if I heard it again, it

would be taken away permanently. He freaked out, and slammed the

door....

I am sorry to vent - It's just hard to get anyone else to understand.

And then people look at you like you are suck a horrible parent.

>

> > And my sanity....

> >

> > Do you find, or have you found that when your children are going

through growth spurts they completely test your sanity...ability as

parents, as people? I am obviously venting right now...but, I am

exhausted. He is so unhappy right now...and loud, oh my. He has been so

angry, the angry outbursts are killing me. He will yell and

scream....and never wants to talk about anything. Makes life hell with

taking meds, eating, getting his way, behaviour socially...is pushing

me to my limits. He has been very manipulative in public, because he

knows when and where I will discipline, and when and where I can't. He

won't sleep at night. The motormouth is constant right now....

> >

> > I am going to lose my mind!!!! Sorry - please, somebody tell me I'm

not crazy, and how long it's going to last...because he can't get in to

see his doctor until next week.

> >

> >

>

“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