While I do appreciate the few hours respite I get occasionally, I am sick of hearing the same old things and a whole bunch of new ones!
first (and this the title of a blog post by the author of the blog pathological demand avoidance, an autistic spectrum disorder)
“Well she doesn’t behave like that with me”
It comes down to a number of things
- She unwittingly, while being nice grandma, was using PDA strategies of a sort
- She sees Dinky less and less every year. So dinky tries harder.
- Dinky holds it all in and releases her stress at home with me.
Yesterday was no different.
I left dinky in London with her grandparents at 10.20 in the morning. She got back at 9.30pm, as soon as her grandparents left, it was meltdown central.
She couldn’t get herself dressed for bed, she couldn’t walk to the toilet, she didn’t want to sleep in her own bed. She was crying and shouting, I tried to wipe her tears and got a punch and screamed at for it. She didn’t want to be alone but I wasn’t allowed to touch her.
She doesn’t see this side of dinky.
My dad sees more and more and is coming round to the fact that maybe, just maybe all is not as it seems.
He is still learning the best way to deal with dinky, and it is more miss than hit, but at least he has stopped with the ridiculous explanations as to why Dinky is the way she is (the worst one being “it must be the Irish-Italian mix”).
One good thing about the late arrival home last night, is that this morning, Dinky got up at 7am rather than 5-5.30am!
She made me laugh, she wanted me to get some more honey loops but they don’t have any at our local shop so I got some honey cheerios instead. I put the packet in the honey loops box.
She opened the box and said “Hey, you promised you would get honey loops.”
I replied ” are they in a honey loop box, and are they hoops with honey?”
Dinky said “Well, yes but they are not the same.. mail them mummy! Tell them they put the wrong ones in!”
“Ok sweet, I will”
She eats 2 mouthfuls, “Mum, don’t mail them, they made them deliciouser”!
After a battle with dressing and brushing teeth, the speech and language therapist turned up.
Dinky was chatting away, telling her she has friends coming over later, that she has pictures that tell her what she is doing everyday. I did try to tell the woman on the phone that dinky was very verbal, I just thinks she lacks some understanding and that she is still a little behind in her speech. When she heard dinky talk she put one case down, and said “I don’t think we will be needing this test, definitely too advanced for that one!”
She got out a computer and asked dinky to listen to the voice and point to the picture it was describing
After 15 minutes of ‘the star is in the box’ ect, dinky’s score was 4 years and 9 months. A little behind but nothing major.
Then the Salt (Speech and language therapist) pulled out some pictures and recorded Dinky explaining what was happening in the pictures. Dinky wanted to listen to it again. So we sat and listened to the 10 minute recording again. The Salt asked dinky to go off and play with some toys while we had a chat and dinky shouted no! I asked dinky if she wanted to get one of her reading books out for a minute. She said no. The salt said she didn’t think dinky could read. Dinky said “I CAN READ, I JUST DONT WANT TO!” and promptly sat down arms folded.
The salt asked when the appointment for the paediatrician was, I told her. She asked if it was for ASD. I said it was but a more high functioning yet demand avoidant form of ASD. She nodded and said “Oh yes, I see that, and I expect you will get her a statement too no doubt, the first part of the assessment she was only a little behind but the second part she was much further behind, how much I can only say after I have transcribed it and scored it when I get back, I will send the report in an email in a few days”.
It is hard because I don’t want to fully commit to saying dinky definitely has PDA or an ASD. However the more I learn, the more I read about other children who have been diagnosed with PDA and meeting one rather special lad with PDA. The less and less I can dispute it, but there is a chance that the paediatrician will dismiss it out of hand as it is not in the ICD 10 or the new DSM5. Then what? My child faces the agony I read too much about in a PDA group where children are being labelled difficult and wilful and hundreds of parents are being blamed for the way their children are, their difficulties are not being recognised. Some have ill fitting labels such as Asperger’s or asd or high functioning autism, which doesn’t really help because the strategies don’t work.
The unknown is actually the scariest thing to anyone. I guess it is going to be like this until I have met the paediatrician. A will he wont he scenario. I just want what is best for dinky. I don’t want a label for her. I hate this nonsense about parents wanting to label their children. Would a parent want their child labelled as diabetic or does the parent want to see if their child has diabetes so it can be treated appropriately? Why is it so different with neurological differences?
I read an article from a newspaper online regarding PDA. Some of the replies to it were disgusting. It was all blame the parents for lack of boundaries, rules and discipline, which I thought was funny, because PDA children tend to behave better with fewer boundaries, less rules and discipline just doesn’t work. All the smiley faced charts in the world wont get dinky to do something she doesn’t want to. She is smart. She will do one bit ask for the sticker and go off. The old school fell for it hook line and sinker!
Sorry I am a little all over the place today, I am so impatient it is untrue! I now just want the results of the second part of the assessment. This whole paediatrician thing is going to either drive me potty waiting or teach me patience. The thing is they never say what they already know. I mean yes I know dinky scored less on the second part, but she must have an inkling of how much, a year behind, 18 months? I just have to be good and wait….