doubting everything

[Guest guest]

We had bad news from the eye doctor appointment today, and this has caused me to

go into a downward spiral. I am now beginning to doubt everything, including

myself, my therapists, and my choices for . I feel so lost at this

point. I am feeling very overwhelmed working full time, running like a maniac

to therapies, doctor appointments, trying to find the right fit for preschool,

battling for her services in the school, keeping my typical children in a happy

life.

We are now battling glasses, Theratogs, leg braces, augmentative communication,

and tantrums. I often wonder if any of the devices are really going to help

her.

I am really struggling with the total lack of progress we are seeing in speech.

We go to the Kaufman Center- which the insurance does not cover, and I am

starting to feel that my hopes were up too high after my first meeting with

. We have now been there 7 months, and we aren't seeing very much progress

in speech at all. She does sign more now though, and is trying to say a few

words, but not like at all I thought would happen. She really only says about 5

words and is going on 3 years old. I feel that her therapist is frustrated with

her- and the therapist is missing quite a few appointments at this point. We do

everything we are supposed to do. We work really hard at home, dedicate every

moment we can to her.

We also go there for OT, and in that case, we are seeing a great deal of

progress, but now, has started tantrums when she sees her OT. I think

it is because she has associated her with work. We are able to work through it

so far, and the sessions are not a waste of time.

I feel at times, that with her delays, she really only acts like 1 1/2, and that

is TOTALLY depressing. I've gotten to the point it is really hard to be around

other kids and their families because all I do is make excuses, or explain the

heck out of everything.

I am at the point that I don't know what else I can do. I feel that I've lost

faith and hope everywhere. I don't have any friends that have children with

special needs, and I am so sick of hearing that God only gives you what you can

handle. I am SO sick of hearing the petty complaints that they couldn't get

their nails done, or about what type of car they are getting etc.. Really,

let's hear a real problem. I'd like to sock them! It's gotten to the point

that I don't socialize much anymore.

I am so tired of hearing from the therapists that they don't have a crystal ball

(that's what our PT said before was walking around age 2). I feel like

they know what she is really going to turn out like, but won't tell us, because

they are making money off of us. (This is so not my usual personality, but I am

exhausted from all of the guessing games).

These are the questions I never get answered: Does she really have CP? How

come the doctors can't tell us. Why does her brain look normal? Why can't she

speak? What will she turn out like? Should I put her in a cognitively impaired

classroom? How far behind is she? Will she catch up (obviously not) What is

HBOT? Does it effect children who have had seizures? Should we try alternative

medicines? I do my own research and it says that developmentally delayed really

mean retarded- is this really true? Is this really just a sugar coat for the

parents of children like ?

I thank you all for listening, but you are the only true people that understand

our daily struggles. I LOVE my little girl and want to do everything right.

Sandy

http://nataliehopesjourney.com