This Morning, dinky had managed to sneak into the living room and get hay and wood shavings all over the floor.
I got the hoover out and she scarpered, only to return smiling wearing her ear defenders. She the watched the bits fly round the hoover, then moved to the side that the air blew out. It was the strangest thing (thinking like an NT, obviously this was absolutely in the realms of normal for dinky), I had seen so I took a picture. Then I looked at it after, and had that flickering thought ‘I shouldn’t have pictures like this’. It is all part and parcel of the is she isn’t she, game that I have had since I found out she could possibly have an ASD. You think they are fine, then you have evidence they are not. You are told there is nothing wrong, but you know there is. You fight, but you don’t know if you should be, as you could end up with social services and an FII case if you push too hard!
In short it is a bloody nightmare… but pictures like that.. they really make you think! Then you get muppets come and make everything feel like fighting a losing series of battles!
I took Dinky to her group to make Pizza’s and watch films. It was there that I bumped into a friend I no longer talk to very much. Her son is a year older than Dinky and last year he was diagnosed with Autism (although at the time she said he was diagnosed with autism spectrum disorder/ high functioning autism). My friend was a little annoyed that Dinky was sent to be assessed for autism spectrum disorder. I don’t know what she thought it was about, as I was too annoyed at her not putting DInky’s need above her idea that somehow she is the only person in the world with a child with autism. I think that since Dinky was awarded DLA and moved schools she has realised that maybe there is something going on. She asked how that was all going and when I mentioned that the paediatrician agrees Dinky meets the criteria for PDA, I was met with the expected… “what?” (I really feel like making some PDA cards to hand out to save me explaining PDA to everyone!) So I explained that PDA is an autism spectrum disorder. We were chatting about the children and she offered me a lift into town. So I accepted. We discussed the diagnostic procedure and how frustrating it is. When we stopped the other end she said something I was not expecting.
“So if she gets a diagnosis it wont be PDA it will be ASD?”
“Probably as it is just seen as ‘on the spectrum'”
“Oh, well mine has a diagnosis of autism which is different to autism spectrum. They are separate.”
“Er, no the spectrum has severe classic autism at one end and Asperger’s at the other. Then there are all those in between. Dinky and your son would be somewhere near the top end of the spectrum”
“Well, (son’s name) is autistic”
“So are people with Asperger’s, and if Dinky gets a diagnosis of PDA or ASD then she would be described as being autistic too.”
It does say a lot about why we haven’t really spoken when she looks shocked and disgusted at the same time! To her Dinky couldn’t POSSIBLY be autistic!
Which is bloody ridiculous!
I came home and did some more on the PDA pictures I have been working on, while watching a tv programme, and made them into a document for tonight’s visit to the pub, as I am bound to be asked questions on PDA as there is an article in the attest edition of the national autistic society’s magazine.
I then get a text asking me to confirm the Family link worker on Tuesday. (I will come to this later).
I then do some housework and go off to collect Dinky. The old child minder is there to pick up my old friend’s son, and she looks shocked as anything that Dinky is there. Well, this is the same person who took on my friend’s son to get some recognition for taking on an autistic child.
When I get home with dinky after her being on the verge of meltdown all the way home, she spins for nearly half an hour then settles into Sheera and Diego game.
I get a call from my dad to say he will be late to have Dinky so I can go out…. why? Oh to get his phone upgraded 8 months early.
Then I get another call saying he will be even later because he missed the train, and he was annoyed because the date as wrong and he had to wait until the next day anyway because he had changed address and couldn’t change his contract in a certain time frame. So he gets no phone! There was no apology just ranting, so I am no longer going out because by the time I get out it will almost be time to come home.
I don’t ask my father for much, he always says that he will be more than happy to babysit if I want a social life. Obviously I missed the part where that meant ‘only if I haven’t got something more important to do.. like get an early upgrade’. It is nice to know that we come after taking union calls on his own time and now after his phone!
I start thinking about support and how I get let down.
In regards to services, I was annoyed about the family link worker situation as the woman who phoned was the SAME woman who phoned me ON my birthday to tell me that we no longer qualified for a link worker because Dinky goes to an academy! That was 3 months ago. The first referral was made in February. So this is 6 months down the line.
Then I think that that could have been one more person at the TAC, which was bloody pointless because they said cant get services in until they now the outcome of Dinky’s assessments. Which is bloody ridiculous as it could take a year… or longer!
I am on waiting lists for respite, and with 3 weeks to go of the holidays have about 6 hours to myself where I don’t have to worry about Dinky. I cant rely on my dad anymore… who knows what else might take precedence.
I have just about given up n the notion that the school will do anything productive and I am sure they are going to end up leaving her to flounder. Which just makes me blame myself as I cant help remembering what the play therapist said, when she said, Dinky is just like me, everything just seems to roll right off us.
Well that is like the saying water off a ducks back. Which is fitting, as we may look fine and like we can coast through, gliding effortlessly through the water, when instead under the water we are kicking ten to the dozen just to stay afloat.
I don’t understand what I am supposed to do. If I look like I cant cope I am petrified they will take Dinky and services haven’t exactly been helpful to either of us in our lives. Yet we face the ‘they are doing fine and look normal’, so we don’t get ay support.
It is a fine line one which I do not want to come off.
Where does that leave us?
Well I have a father who offers support but doesn’t give it, we have a CAF which is pointless and empty, a family link worker who Is 6 months late, a paediatrician who doesn’t know his own field, friends who are not supportive and the rest of both of our families don’t give a hoot.
Now I feel dejected and angry and sick of fighting for no outcomes.
I am struggling and it seems that all anyone sees is a flaming gliding duck!