Special needs group and an interesting phone call

Yesterday Dinky went to her special needs group which was good for both of us. It has been a long week for both of us. I was right in thinking I packed too much into this week, it didn’t help that we had 3 sets of visitors too.

I get very confused around dinky and routines. Dinky seems to love routine and she needs it to refer to, so that she knows what we are doing and when. The only part she doesn’t like following, is bedtime. She doesn’t see the point in going to bed if she is not tired and the more I tell her it is bedtime the more she will use her avoidance tactics (normally pretending she is already asleep, therefore she cant hear, speak or move).

I do believe the amount of new people and new things she as done this week has had an averse effect on her. I guess I thought if she was busy she wouldn’t play up so much at home. Wrong. It just made her worse when she got home or after the guests left.

I had a very interesting conversation with someone I haven’t spoken to in a long while about dinky. (I had put a PDA aware symbol as my facebook profile pic and she responded). Well about dinky, PDA, and autism. My friend is a psychology student at university. She had recently studied the autism spectrum in depth as part of her degree and got very good marks for her Autism essay, yet never heard of PDA. Which is an all to familiar thing. I doubt many will, and I doubt it will get into the DSM or ICD because they are trying to reduce the sub categories of the autism spectrum and are instead using the term ‘ASD’ or ‘Autism Spectrum Disorder’.

Where dinky fits in I am not sure. PDA is definitely not is the new DSM V, and wont be, as no other subgroups will go in, if one as big as Asperger’s comes out. As for the ICD 10, it is not in there either. This means that she ‘probably’ wont get a stand alone diagnosis of PDA. Even then it depends on the beliefs of the clinician, in my case the paediatrician. If they don’t think PDA exists (despite the thousands of children and adults who all have a very similar presentation with various autistic traits), it is hard to say whether dinky would get a diagnosis of ASD.

I have heard some shocking stories about how ASD is interpreted by professionals/clinicians. It is so difficult to predict what will happen.

The subject of labels came up in our conversation. My friend doesn’t like a child labelled as they are then labelled for life. Which I understand. However I am not looking for a label. I am looking for answers, understanding and for Dinky to get the right support, especially at school. I have said if she doesn’t get a diagnosis, then she doesn’t.

Just like in the circus post with the badge, it would just be nice to have understanding, not blame and criticism. I would be able to completely ignore all whispers as ignorance, and cut off all interfering busy bodies with “unless your comment includes the cure for ASD/PDA don’t waste your breath!”

I am not happy with saying she has ASD/PDA until she gets a diagnosis, I allow her to wear the badge as it says ‘special needs’, which she does, in terms of her SEN status (emotional and behavioural difficulties) and her speech and language report.

I guess we are in limbo. Dinky can definitely not be described as a typical 5 year old. Yet we are waiting on the paediatrician appointment and however many follow up appointments we have to attend after to understand more.

It was a very interesting conversation. I was shocked that refusing to write is also a sign. But it is what it is right?

I had to break off the conversation in order to get dinky from her trip to see ‘All stars’ at the cinema.

I always have very short but interesting conversations with the leader of the group. Apparently dinky was fine. She made everyone laugh by teaching them how to eat the school way. I told her about the activities group at the leisure centre, she was shocked. She said dinky had run once but not far. She has never attacked or spat a member of staff. I said it was probably because they knew how to handle her. She was chuffed to be the only one dinky seems to behave for, and said she seemed to just have the touch!

Again dinky was more difficult on the way home. She wanted to go to the park but my dad was going to meet us at our house so we had to get back. She was pulling the wrist reins and then shouting that I was hurting her. After 15 minutes of her refusing to move and pulling the reins she decided that she would walk but she had to have a yoghurt and Netflix on the telly at home. Which was fine by me, so we walked home. She was picking arguments with me and holding my hand while head butting me in the hip.
My dad got held up, so it was just us for a while. She decided she was going to go under her table and line up some little toys, so I changed the channel. 20 minutes later she surfaced and got extremely angry with me. She was screaming so much I could barely understand what she was saying and she was throwing whatever came to hand at me. Including our ‘welcome to the nut house’ wooden sign (which bloody hurt). I lost my temper after that and told her to go let off steam in her room! To which she Slammed the door a few times and the one to her room. When my dad arrived she came down, got mad at him for suggesting that she eat her dinner and went back upstairs. She didn’t have dinner last night, because she wouldn’t go to the table to eat. I had to get her dressed for bed because she was so on edge. I told her she had to stay upstairs but she could stay up for a little while jumping in order to calm down.

Eventually the noise stopped upstairs and she went to sleep.

I then watched a film with my dad. He went home and I had another very long conversation on the phone.

I am shattered this morning. Dinky is very much on the edge, so I am not going to push anything today…

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