Re: OT autism...Jen...MISSY

[Guest guest]

Missy,

Thanks for your post...it is so nice to know there are others out there who can

understand what it is that we go through...I am also on a mailing list for

autism that helps a lot.

Have you ever heard of something called AIT? It is auditory integration therapy

or training (I don't know for sure what the T stands for) and is for autistic

children with sound sensitivities. I have never had to deal with that aspect of

the disorder and it sounds extremely difficult for you to have to deal with.

They talked about this AIT at our last support group meeting and it seems to

help a great deal of children...maybe something worth looking into??? I do

know it is quite expensive but one of the ladies at the meeting said she THOUGHT

that Medicaid and some insurance companies may pay for it. I wanted to look

into it for Brocky but he wouldn't leave the headphones on his head for it to

work. I don't have a lot of info about it but I'd be more than willing to share

what I've got if you're interested.

On a happier note in this whole craziness that is autism...Brocky, after almost

a full year of taking him to the bathroom EVERY 30 minutes, is FINALLY starting

to make a connection that you do your business in the toilet!!! He is peeing

and pooping in there a good part of the time and is now starting to initiate the

potty trips on his own. WooHoo and YeeHaw! He is turning 7 on Sunday and is

still nonverbal and for the most part noncommunicative (he does do some

handleading for food and water), VERY hyper and somewhat aggressive when

agitated, BUT, by golly...he's figuring out the potty thing!!! Small steps and

one day at a time but there's progress, slowly but surely

ANYWAY, just as you feel for me, I feel for you also, and I am wishing you all

the best in the day to day struggles.

Jen

Re: autism...Jen

Jen...I feel for you, truly! My daughter is of the hyperactive variety as

well. The last nap I remember was when she was 10 months old, she's 4 now.

I don't ever remember her dozing off in the car...ever. I also know about

the violence. People think you are crazy, and a push over. Our doc always

says that I have it bad because I have this adorable little blonde haired

girl with Dr.Jeckyll/Mr. Hyde personality. Be thankful you don't have the

sound sensitivity on top of it all. I don't envy what you are going through

at all, but the sound sensitivity has to be the worst hurdle we have come to

yet. If any of the parrots make a peep she runs into a separate room and

slams the door. She continues screaming in pain with her ears covered. She

will cry hysterically for 15-30 minutes after each occurrence. When we are

out she just screams and cries hysterically until I pick her up and run to

what seems like the other end of the earth with her. I can tell you from

experience that a Saturn is an extremly sound proof car! Other things that

trigger the same response for her is diesel truck engines, airplanes, certain

amusement park rides (she can hear a certain ride in the parking lot

already), reverse beepers on trucks, the price scanner at the supermarket,

phone ringing, etc, just to name a few specifics. It has made it nearly

impossible to live anywhere near normal. The weird part is that music and

instruments do not bother her in the least, at any level. We have gone to

concerts with no problem at all. In fact, I am taking her to see Sammy Hagar

& Lee Roth next week. On a normal level, I would never attempt it for

fear that she would pick up a negitive word or too, but her comprehension is

so far behind that she just loves the music and has no concept of any other

verbalization, or speech alone. I found something she likes, and to heck

with political correctness, we are going!

I always thought that the symptoms that she had at the beginning were the

symptoms that we were stuck with. How wrong I was, she is progressively

getting worse. Her speech is slightly improving, and then the sound

sensitivity comes along. Grrrr.

I wish you luck in your dealings with your son. It is probably the most

trying thing you will ever do. I consider myself a very strong willed

individual and I have never let MY pain break me down. However, I have on

occasion, been on the back porch crying, face to the sky, to the guy who

oversee's my religion of choice. At those times, my question is how much can

I tolerate, and buddy, you have totally overestimated me. This usually ends

with me begging that the joke be over and let me go back to normalcy. The

next day I wake up and do it again.

Sorry to ramble on. Please know that you are not alone.

Missy

> don't know if he has any sound sensitivity or not...he never has any

> problems when we're out and about...he doesn't startle easily or anything

> but sometimes when I run the vacuum he will run right up to it and wait for

> me to 'run him over' and sometimes he will run for the corner of the couch

> and cover his ears. So I guess sometimes he does and sometimes he doesn't

> ... now if I could just figure out when and why I'd have it made. I took

> Brocky grocery shopping at Walmart today and he did amazingly well...no

> major fits and no beating up on himself or me...twas a good day This

> fibro/autism combo really stinks though that's for sure...being in pain and

> tired all the time and dealing with a kid who doesn't even need much sleep,

> is hyperactive, and can get a tad bit violent (okay maybe more than a tad)

> and give you a good pounding when he is angry and agitated just doesn't mix

> well at all School will help though and he does seem to like it there

> and makes progress here and there so it's a plus for both of us.

> Jen

>

[Guest guest]

In a message dated 08/09/2002 11:37:23 PM US Eastern Standard Time,

Mommy@... writes:

> he's figuring out the potty thing

Yeaaahhhh I'm happy this has to make it much easier for you Jen. Your right

one day at a time.....is all anyone can ever do. I can't imagine having Fibro

plus a child with autism. I have a couple of friends who's children have this

disorder and just going to their house and watching them deal with sooo many

varities of difficulties makes me tired...and completely wore out. I can't

imagine to have to acctually deal with it on a daily basis. Just remember in

those hard times when it seems like your at the end of your rope and you

can't take another minute of any kind of stress. That there is a reason that

God does everything. We may not know it right now, but someday, sometime we

will. God Bless and I admire you & missy for all your continuous strength.

Hugzzz

Allicia