OFF TOPIC - Preparedness

[Guest guest]

After Valentina's story last week, I feel I must say something. We

went through much the same situation in Florida, turned in by a

social worker at my son's school who misunderstood biomedical

intervention completely and turned us in for a rash between his

upper lip and nose after a long cold and yeast infection.

The CPS rep came unannounced, in a cloud of perfume (my son is

severely allergic to perfume), dressed in bright colored leather from

head to toe (when I opened the door I thought she was selling makeup

or something), and proceeded to try and understand our son. She was a

lovely woman and very nice but barely literate for the kind of

interviewing that changes a child's life forever. I read what simple

notes she took and was silently very afraid because she wasn't

getting anything important down, just a word here or a sentence

fragment there. I had to strip my son for this stranger (not good for

a child with fear of strangers) and she took pictures of him NAKED

from every angle! Needless to say, there were no marks on his body

from a cold and yeast infection, although if she had checked his

bottom very closely, she would have seen some yeast rash if she

looked hard enough. I'm glad she didn't because the one of the words

my son would say was, " Private! " if anyone tried to touch him that he

didn't know or come in the bathroom, and he would have had a fit

being invaded in that way by someone not a doctor or parent or

caregiver.

She did NOT know what autism even was and actually THOUGHT we had

coached him to be silent until our ABA therapist set her straight in

a big way during her phone interview by the woman (she was very

exasperated as she knew how dedicated we were to our child) on the

non-verbal issues of autism. IF WE HAD NOT HAD DOCTOR'S LETTERS AND

WRITTEN SCRIPTS FOR EVERYTHING WE WERE DOING ON HAND, things would

have turned out very badly. As it was, I had to get another 2 or 3

doctor's letters within 48 hours sent to the school by fax for all

kinds of little picky things, just about anything that came to the

social worker's mind however random. Luckily one doctor could address

2 or 3 items for me, so I squeaked under the time limit.

I asked for copies of the additional doctors' letters because I had

to have them sent direct to the school in the interest of time. I

never got copies of the letters and when I asked to see my son's

Personal file a couple of days before we left the state (not his

Educational or IEP file) the letters were not there or they would not

admit they were. And frankly I was too intimidated by the experience

to push, and I had nightmares for months about the whole awful thing.

I never have been treated so shabbily or felt so helpless. BTW, a

social worker is immune to felony charges for false reporting. BUT

anyone else reporting in a personal context falsely can be charged on

a felony if you know who they are.

My son's doctors are very well respected for what they do and were

very busy, so I was on the phone the whole 2 days getting all the

other issues covered. THEN I never could get resolution that the case

was closed, no matter how high in the CPS organization I called. I

never have, even though we have moved and I have called since to try

and close the file.

Just to give you another quick example, because I know it is

unbelievable, I have a friend who is retiring after 35 years of

excellent work for special education in another area of Florida. She

has a son with autism and she was turned into CPS for feeding her son

a special sort of South American sweet potato that is very

nutritious, a vegetable he loves to eat and thrives on. Needless to

say, they soon found out they had barked up the wrong tree with her

references from every part of her life personal and professional.

After I told a few of my friends about it, they told me of many

similar instances in the autism community.

So, it doesn't matter if you're on Medicare or not, whether you're

well off or poor, educated or not, the CPS people can turn your life

upside down in a day and never apologize or even acknowledge that you

are within the law and not guilty of anything. The child with obvious

horrors going on in the home gets missed again and again until they

are dead, while the agents are hounding people who work incessantly

to help their children with disabilities ..... It seems like they

could profile child abusers like they do drug traffickers and focus

their resources in that area, but I digress .....

Now to be fair, I know others who have been reported for various

small but noteworthy things that have not had any trouble with CPS

when it was explained as a cat scratch or something simple. It was

just routine. But I don't hear nearly as many of those kinds of

benign stories, probably because being reported is a very scary

experience and people don't talk about it much.

So get those LETTERS and SCRIPTS in your house, laminated, and easy

to find if you are doing anything that could be misconstrued by

someone on the outside looking in or someone who does not like you.

CFGF diet, allergies, vitamins recommended, therapies recommended

including cranial - not just speech/ABA/OT/PT - anything that you do

that is not usual.

Ludwig

" Thinking is the hardest work on earth,

that's why so few people engage in it. "

Henry Ford