Yet again I find myself "tangled up" with the SS.
Ooops, that would be Social Services.....Sorry, I'm sure!
I am becoming an old hand at this.....deeply narked that, yet again, I have to hold my life up for inspection and justify my day-to-day existance to a stranger, but (now) quite used to the unwanted attention enough to see it for what it is.
However, today I hit a new level of irritation with the SS.
See, because I have moved house, i am now dealing with a new SS person. Not a problem in itself, I quite enjoy the change in them as they walk into the house all abrupt and hard-faced and leave smiling and much softer than when they arrived.
The new level was hit quite early on in the whole episode when the SW commented that "it has been suggested that she (Daisy) has some kind of Syndrome".
Erm......
WHAT????????
I am still trying to decide which annoyed me more, the use of the word "suggestion" or the casuality of the phrase "some kind of Syndrome".
She has a proper diagnosis of PDA Syndrome, it's not a "suggestion" from the team of professionals who assessed her over 2 days. I have her written report which contains a full diagnosis and a prognosis which screams that my Daisy will never be able to live independently IN HER ENTIRE LIFE.
It is not "some kind of Syndrome" and to use those words belittles and demeans Daisy, me, the people who work their bums off every day dealing with PDA persons whether they are professionals or parents.
Is it any wonder that me and all the parents of PDA children (be they children or adults) have to shout really loudly to even get people to LOOK in our direction, never mind actually help us.
Why the hell do "professional" bodies share information that has been cleansed? Why bother to share the information if the most important part is missing?
So, I am gonna say it: loud and proud:
MY DAUGHTER HAS A RARE, PERVASIVE AND DEBILITATING FORM OF AUTISM KNOWN AS PATHOLOGICAL DEMAND AVOIDANCE.
I am willing and prepared to share this information with anyone who will stand still long enough for me to say it.....so why can't the people who are *supposed* to have Daisy's best interests at heart doing the same thing?
Isn't the sharing of information what they are all about?
Or doesn't it make for a very interesting case?
So unimpressed.
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Maybe part of your purpose in life is to help them understand. I understand your anger and frustration... especially when it means you are the one that gets slighted when the SS worker doesn't understand. But you have an opportunity to help others understand. *hugs* And as tiring as it gets, as irritating as it gets, you can show the way and make clear what it is they need to understand about Daisy, about you and about the difficulties you both face when living with a person with PDA.
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