Completely frustrated....

[Guest guest]

Hi all I'm new here but have been reading for the past few weeks some of the

post. I have a 6 year old daughter. I feel the need to explain myself. I guess

because of the agonizing evaluations we have recently completed.

I'm a mother and wife of 9 children and 1 grandchild. My 6th child who is

currently 6 years old has been 'different' for many years now. From about age

18 months through 3 years old we thought she had a hearing problem because of

her non-responsiveness to us. But it was always so strange because she would

cover her ears in the car if the stereo was to high or at crowded places but no

response if you called her name or if you asked her a question. She never did

baby babble. She has always been different. Not really wanting to be held a lot

unless she chose to. If you wanted to do the holding it had to be her decision.

After numerous hearing test, sleepless nights other behaviors coming out. She

did not speak a full sentence of more than 2 words until she was 5 and in speech

therapy. I home school. I have 2 children in college and 1 child who graduated

college. I do go through the school system for my daughters speech.

My 6 year old daughter is terrified of the rain, you can not say the word spider

in front of her without her going into a screaming crying fit. She is scared of

the dark but doesn't like the light to bright in the house. You can not talk

about the dark or the rain. You can not say names of her older siblings because

they live in other states married and in college etc. without her crying for

hours without any consoling. She gets very fixated on one topic like super

heroes. She has been obsessed with spider man for 3 years now. She hates warm

water and takes cold baths no showers at all. She can only wear certain clothes,

she gets 'stuck' on certain foods like oatmeal and will eat nothing but it for

extended periods of time. She rarely sleeps like 5 hours a night. She takes

every thing that is said literally. She tells you things now that her speech has

developed more. But they are often not true things. They have never happened but

to her it's real. Everything from remember the kitten you gave me for Christmas

to other fantastical tales. She hits herself in her head or beats her head on

the wall when she is upset and if you attempt to discipline her for anything

that she does that is not right it ends in two ways... one she screams she is

the worse daughter in the world and hits herself in the head or two she has a

full blown tantrum where she says mommy and daddy don't love me any more over

and over and over again with this going on for 10 minutes to an hour. She gets

stuck on phrases and repeats them over and over and over again. She can not

connect her speech with what she knows. For instance you can ask her to count

and she religiously says 1, 2, 3, 4, 7, 9, 12 92. But if there is a picture with

numbers she can count as high as the numbers go. However if you point to a

random number she can not tell you that number. Same with colors. She can tell

you all the sounds of the alphabet but name only 9 letters and still can not

sing the ABC song correctly. When she gets upset or sad she can become violent

and hit me or her siblings in a heart beat. She doesn't seem to feel pain like

she should. She has had many abscessed teeth that we had no clue were that way

until we went for regular checkups. Until recently there was hardly had any eye

contact. But now that is better. We have been doing exercises to work on that.

She also will rock herself against the back of the couch from time to time but I

am able to get her to stop with some coaxing.

After years of having her hearing tested and it be fine. And 2 years of speech I

was reading something and it all clicked that possible she could be autistic. I

go to our family practitioner and she agrees. She refers me to the MCSW who says

she feels it's right on target but on the lower end perhaps. She tells me to go

through the school for testing even though she is home schooled. I talk to her

speech therapist who said from the moment she met her she felt she was on the

spectrum. While over whelmed thinking that she was autistic I was relieved to

know that maybe now we could go forward with some of the sensory issues and

other things going on and I would know how better to help her.

I go through the evaluation process. I did not prepare her for the final

evaluation with the school psychologist. I told her we were going in for a test.

But I failed to prepare her that it would not be her regular speech teacher

there. We get there she drops to the floor and wraps around my leg. I help her

up and tell her I'm going with her. She gets up reluctantly and comes with me.

She refuses to look or talk to this man. She did not like him.

I have to prepare her for any routine change or she gets very agitated. Finally

the speech therapist shows up and he starts the evaluation over. The

psychologist has come to the conclusion that she is not autistic because she

looked at him when he called her name and she glanced super quick at his hand

when he pointed. He said if she was autistic she would not of been able to look

at him and follow his hand even with just a glance. He pretty much said there

was nothing wrong with her but everything with me. Although he had not spoken to

me or interviewed me or had any idea my educational background or previous

career. He wrote up the report saying there was no way to know if she is

teachable considering she has not been in public school to know if she responds

to general education. He basically said his recommendation is to put her in

public school in special education classes and see what happens. He's not around

when I am up at 2am finding the only cup she will drink out of because the

others 'hurt' her mouth or make it taste funny. Or when the bath water has any

warmth to it because it 'hurts' and its 'scary' if it's warm it doesn't feel

right and I have to drain the tub and do it again. Or when I mention my oldest

daughters name that sends her into crying because she misses her. Or when her

pants are not feeling right and we have to find another pair until one does not

'hurt'.

He said she was at the education level of a 4 to 5 year old and it's most likely

my teaching. Forget that NONE Of my other children have ANY of these issues.

They excel in their school work. That my 9 year old is in her second year of

Latin or that my other kids are excelling in college.

He felt she may have some anxiety and that I should try to reason with her about

not being afraid of things and she should be fine within one year of putting her

in the magic public schools special education classes.

I guess what I am just frustrated and wondering ....am I crazy is she not

autistic?? Am I grasping at straws? I just don't think that my child is

deliberately not learning as he also stated he felt she was strong willed. Do I

just take it with a grain of salt and deal with her on my own. Do I attempt to

have her re-evaluated if that is even an option? I feel frustrated, I feel over

whelmed. She is a beautiful little girl. She knows things... but you have to be

inventive on seeing what she knows. Because I may ask her a question like What

is the color of your shirt and she may answer I like oatmeal for breakfast. She

plays around her sisters more than with them. She is unique an I love her but is

there anything I can do or should do or anything that anyone can say to give me

some hope here? Or does this not sound like ASD at all? Am I just on the wrong

path period. The psychologist did not deny that she has sensory issues. But

insisted many people can have them and not be autistic. I'm not disagreeing that

it could be a separate issue. Not talking a complete sentence until your 5 was

put off as nothing. He thought she may have some mood issues because she did not

like him and would not talk to him until the speech therapist showed up who she

has been working with for 2 years now.

I just don't know what to do from here....