Dads 50th = disaster… PDA 5th= 2 calm PDA kids??

Back to dinky..

Now, dinky doesn’t get many birthday invites. Actually, today’s party is her 3rd party invite since starting school in September.
(I almost wrote 2nd, but remembered the bowling where dinky spent most of the time under the lane table on the wire rack. The other party was a trip to the special needs group base with soft play and sensory room.)
I can not tell you how gutting it is to see a wad of party invites make their way round a class and watching dinky be one of the only ones without an invite.
However today was a new experience… A party for the little man who has a PDA diagnosis, who from here on in will be known as A, as he just celebrated his 5th birthday. So an environment where most people knew about the whole PDA issues and where Dinky’s behaviour is not entirely alien to those involved.

This morning Dinky was a pickle. She wouldn’t eat breakfast without her tablet device and had to have her leg up on the table. She wouldn’t wear what I picked out, yet wouldn’t pick out an outfit. When we finally picked what to wear, she wouldn’t put it on.
I tried every which way, I tried asking her what was first to go on, she told me she couldn’t put anything on, because she hadn’t taken her pyjamas off.
I asked her if that meant she should take her pyjamas off. She said she didn’t want to because it would make her arm hurt.
I asked her if she should go to the party in her pyjamas and she said that would be too silly, and called me weird.

Once we finally got her dressed she was arguing with herself over what shoes to wear. She tried to argue with me, but I wasn’t bothered which ones as long as she was ready to go and had shoes on her feet.
Then came the ‘what toys to take’.
When we started dinky’s bag had the following items in:
Birthday boys present
6 inch lady and tramp teddies
A very irritating alien ship
Mini elmo
The mouse from the gruffalo
The iPhone
The Samsung tab
(by this point it was overflowing )

She was still trying to put her
jake toy
big tiger (named Rosie)
pink monkey
And her Nemo swim hat.

After 45 minutes of negotiations, crying, hitting (despite reading the ‘my hands’ social story), spitting and pleading we ended up with

The birthday boys present
Lady and tramp
The iPhone and headphones
And Chocolate

Not bad! Of course Simba goes everywhere so he was carried in her hands.
Only 2 and a half hours to get ready to go… but still, we were ready with 10 minutes to spare! I left then and it was a good job too. She wanted her chewy necklace which I had to retrieve from my room, and then she walked at a pace sloths would be proud of!

On the way to the bus stop by the shops is when we have our best conversations. Today she was trying to convince me there were no such things as laws.
This was in a bid to get out of going to school on Tuesday as tomorrow is an inset day. She asked what would happen if she broke the law. I told her the police would come. So she said she would kick them, and when I said she would be in more trouble she said she would kick them more. I tried to explain that that probably wasn’t the best idea. She said she could do what she wanted. I asked her if it was ok to hit. Trying to use the social story. She said the ‘my hands’ was about her hands and not her feet, so she could still kick. She could still hit but it might make the policemen sad or angry because that is what is in the book.
I tired to explain that it is the same for kicking and biting but she wasn’t taking it in. We had reached the tunnels which is (for some unknown reason) the trigger of “my feet are burning” or “my tummy hurts” or “I can’t walk anymore”. She wasn’t too bad, we had the burning feet “a bit”, and the “not got my extra run”, but we made the bus.
On the bus I managed to get her to wear her headphones. So she was happy. She wore them right up until the train was about to come. Then she was not happy and I can not, for the life of me, work out why that would be, other than she was nervous about the party. I had been talking about the party for a while and explaining that there will be new people, it is at A’s house, and that there will no doubt be party games and so on.
She was hitting my arm, so I tried to tell her no hitting, and reciting bits from the social story again. To my utter amazement she stopped! Then she tried taking her wrist reins off. I wonder if there is a way of social storying wrist reins when out. I’m sure I can.
We got on the first train and she refused to sit in the seats I had picked and sat in some with a tray. I wished we had been going more than one stop as some utterly ignorant people were discussing my handling of her tray squeaking!
Basically I asked her not to do it, told her it may upset people, yet she carried on. I left it.
Afterwards it was one of those ‘wish you had a camera’ moments. Dinky was wearing her ‘I’m not naughty, I have special needs’ badge and I made a point of stopping in front of little miss ignorant and stood there while she read it, then moved Dinky on and explained that we were about to change platforms and get on the next train in order to meet up with A’s dad.
I couldn’t help smiling, miss ignorant looked extremely embarrassed and so did her partner/husband who she was ranting to!
On the other platform dinky was still being a pickle. She was climbing on some bars, it was quite safe, as I was there if she fell back and she was holding onto the steel girder in front of her. She was talking to me in a very babyish tone, which is never normally a good sign. She was saying things like “me hungry”, “me bored”, and when the loud train went by and I had my hands over her ears… “Me don’t like loud train”.
By this point I was wondering if she would be ok for the party. At least if she couldn’t cope then Maria (the lovely mum who introduced me to PDA and mum to the wonderful A), would understand and we could form some kind of plan.
When we got off the train A’s dad was there to meet us and took us to the party. Dinky was straight off to play with A and his neighbour while I spoke to Maria.
She was happy, A was happy the neighbour was happy so it was all good.
As the kids arrived dinky went to play in the playroom. I tried to get her out to play with the other kids, but Maria said she was ok in there. Dinky was having fun playing by herself for a bit. Which was ok, and later on it hit me that that is what she needed to keep herself in a relatively good mood. When the children’s entertainer started it was difficult to get dinky out, but she went, and sat ‘the school way’ on the rug. I actually think her school would be jealous of how she behaved on the rug!
The children’s entertainer was funny and had all the kids laughing. There was only one part where dinky had said something to A and he retaliated and then she got annoyed but the children’s entertainer was using the wand to hit herself so it thoroughly entertained Dinky!
At lunch time dinky ate her usual little amount at party’s, although was thoroughly impressed when the pepperoni pizza slices came out!
I went to check on dinky after she disappeared while I was talking to A’s uncle, she was happy in the playroom with A and 2 others.
I went back out as she wasn’t happy with me intruding.
Not being the best mingler, I spoke to A’s dad and uncle. The kids had come out of the playroom for ice cream, Dinky only likes the chocolate mini milks and they had all gone by the time she got outside. Thankfully an older child was kind enough to let dinky have it as she was not happy. She wasn’t quite angry or really upset, but it may have gone that way.
I thanked the older child as she didn’t have to do that.
The kids went to play on the next part of the garden with the play frame. I was watching from the deck, and was introduced to Maria’s mum. She was a lovely lady and as we were discussing their difficulties A was swinging without much fear on the top of the slide, she asked which was dinky. As we looked back she said she need not have asked as dinky was swinging next to him above the ladder!
When it was time for the cake and games it was hard to get dinky to come back up. Eventually one of the other adults managed to get dinky to race back up to the top. After the cake, dinky disappeared. I found her in the playroom under the table. I blew a kiss and left her as I knew better then to talk to her.
She came back out in time for games. They danced, then played statues, then sleeping lions which cracked me up…

children’s entertainer: OK… the rules of sleeping lions,
no wriggling

both A and Dinky wriggled purposely

No giggling

dinky giggled and A was definitely thinking about it

Last rule.. No Snoring whatsoever! Do you understand?

Dinky: I am going to snore! pretend snores quietly

A: puts his hand up She wants to snore!

Then when the game begins they both snore quietly!

I couldn’t stop laughing!

They went down again to play as they got bored. Then it was time for pass the parcel. Again dinky didn’t want to go back up. However she did just in time. The entertainer was good at spotting which kids looked the most put out and got them the parcel first. Dinky was pointing out which paper it was and seemed to like the dinosaur wrap. So when it stopped at her it was the dinosaur wrap she was very happy!
She picked out her lolly and was happy.
It wasn’t long before she shot down the bottom by herself, so I went after her.
I realised at this point that it was 1pm. I tried to give Dinky warnings but both dinky and A kept asking for more time.
Eventually it got to 1.30 and I managed to get dinky to agree to going ‘soon’. I checked my train time, but then she shot off down the bottom to play. By the time I had managed to get back up to the top and get her in the sort of frame of mind to go we had 10 minutes. Which just wasn’t happening. With it being Sunday and Sunday trains, it was one an hour. So we were going to get the next one. Dinky and A were happy. They were playing in the playroom with A’s new toys.
From here on in I get confused as they went in and out so many times it is ridiculous!
A’s uncle was driving back to London later in the day and offered a lift.
Normally, I wouldn’t accept. I don’t really know him and I felt awkward enough as the invite said 11-1pm. However, for dinky, the best option would have been by car as I couldn’t handle it if she had a meltdown on either train or on the station. Also seeing as neither A nor Dinky had kicked off over anything really all day, both myself and Maria were waiting for it to happen.
All the signs pointed toward meltdown of epic proportion!
However both kids only needed to be reminded to calm down a couple of times. Dinky was found under the table a few more times and made friends with a girl who was quite happy to be led and not listened to as long as they played together.
Again they were playing really nicely. At one point I went to check on them, they were bouncing on a bed with music on full blast. I was unceremoniously thrown out of the room, and went back up with Maria as I wasn’t sure of the house rules.
During all the playing A’s dad brought their shaggy crazy puppy home. Dinky was engrossed playing with the dog!

It was at time to go that things are always interesting for dinky.

Maria suggested her other half go and get dinky as we both know it is always different coming from someone else. Eventually she came up But then shouted that she didn’t want to go and ran off upstairs. She was shouting, threw a toy downstairs at me while I was attempting to get her down. Maria suggested another adult try as I did the whole “right,I’m off bye!” Trick. In the end we managed to get her out and to the car, however she didn’t want to sit in the booster, and she didn’t want to sit on the side, she wanted to sit on my lap. She settled for the middle with her seatbelt on nicely with a bag of Freddo faces!
She was quite well behaved in the car compared to the last trip in a cab!
She listened to music on her phone once she had told A’s uncle she didn’t like his music, and had a small strop. She opened her party box, and began drawing. She was quiet, happy and busy!
We stopped at the shop, I thanked A’s uncle for the lift, and I got dinky an ice cream from the shop.
She made a right mess with the ice cream, which was fine as she walked back ok as was completely preoccupied! When she finished she asked for Simba… Er… Not in my bag, not in her bag! Oh ****** ******* ******* *******!!!
She was not too bad about it but was obviously unhappy. She didn’t want her gelli baff and opted for lady and the tramp as we still had those toys. I got her some snacky food and she sat in her pink pop up tent to eat it.

I sent her to her bedroom at 7.30pm. At 10 she was still playing. I think she maybe asleep now it is 10.35pm.

I’m shattered!

Tomorrow is inset day so we are off to soft play for 2 hours!



Why we banned the word ‘Label’

I have seen many things today and over the last few months, which only go to show why using the word ‘label’ is very detrimental to anyone with a hidden disability.

First of all there is the term ‘label’ itself

I have been asked

“Why are you trying to label your daughter?”

And heard about an incident where someone had said

“Autism is just a label”

And read a comment on a daily mail article

‘PDA is another label for bad parenting’

I will answer all of these….
First… Would a mother who thought their child had diabetes not get them checked for fear of ‘labelling’ them? I don’t think so.
Would a mother of a child who had a wheezing cough which kept recurring refrain from going to the GP in case her child was ‘labelled’ asthmatic? Hmm, nope.

So why is it any different for our kids with developmental/neurological problems?
I encountered a post on a parenting website that said
is it worth labelling my 6 year old son with ASD
I would say yes, because, believe it or not ASD doesnt only affect the child’s parent’s views on him! What about the child? When he asks why he is different, or why he finds certain things so hard. He needs to understand himself. I have heard of children who didn’t know what was going on with themselves calling themselves “losers” or “freaks”.

I am not seeking a label for my child… I am trying to gain a better understanding of her, get her a diagnosis which she can learn to understand when the time comes, and for those directly involved in her care to actually understand her and make her life easier. It can’t be easy having your brain wired a different way to others and them being expected to do as they do. It must be confusing and this is why so many children with ASDs have low self esteem, because they think that the problem is them. It isn’t, not at all. The problem is with the world that refuses to understand them and treat them as the individuals they are.

Autism is certainly not just a label, millions of people on the spectrum and their loved ones, medical and educational professionals will tell you that.

PDA as a label for bad parenting. Hmmm, I am a member of the PDA contact group and other online social PDA groups and I can tell you not one of those parents strike me as a bad parent. They are all loving and caring parents who only want the best for their children. They sacrifice their own happiness and well being for their children’s every day and in some cases in every way.
I am lucky enough to have met a mum and dad of a soon to be 5 year old boy with a diagnosis of PDA. They are kind, considerate and only want the best for their son. They have learnt a whole new style of parenting and taken the hard knocks and dealt with the fallouts. Their son is a very cool little man. He has his own mind and although he is obviously anxious around myself and dinky, his character shines through. PDA is another autism spectrum disorder. One that gets the least amount of recognition from professionals, and is a constant uphill battle. It is anything but a label for bad parenting, in fact no bad parent could ever look after a PDA kid…. They would eat them alive!

Next up, ASD coming under one ‘label’

Again I have seen and partaken in some very frank discussions regarding the DSM V ‘s revisions and the collapsing of the ASD’s into one name.

While I can see why they did it.
( the term aspergers was starting to mean less support or ‘not autistic enough’ for services )
The problem is they will then start using useless terms like ‘high functioning’ ASD. I have just read an article by musings of an aspie (which is under ‘blogs I follow’) about the high/low functioning.
Definitely have a read!
In terms of dinky I’d assume if she didn’t get a diagnosis of PDA and was diagnosed ASD, she would probably be considered high functioning. Which is wonderful for her grandparents or those that don’t really Understand. To them it means ‘not that autistic’. The problem is autistic is autistic. The same with Dinky.
Just because she is able to read well for her age doesn’t mean she is ‘high functioning’, it means she is a good reader, she has strengths. Which I celebrate everyday. However, she has some serious problems. Her expressive language difficulties mean it is difficult for her to get out what she needs to get out. When she feels she can’t make her anger or frustration understood she lashed out. Her anxiety means that unless she is fully involved in learning and doesnt feel like it is a demand or high expectation, she just won’t do it.
Yesterday I realised that retention is also a problem. When dinky was 3 she could name all the planets and their colours. She knew which one was the biggest the smallest, which were gas and which were rock. Yesterday she could only name earth, mars, and Saturn.
What if this happens more and more? Would they still deem her ‘high functioning’ because she appears to be extremely bright?
Also what about her? When she is older, would the term ‘high functioning’ mean she felt that she shouldn’t have the difficulties she does?

Aside from the ridiculous idea of indicators or specifiers (which is only according to the one giving the diagnosis and doesn’t take into account the changes in the child or adult which may alter the level of ‘functioning’), it is also like trying to say all people with an ASD are the same.
It’s like having 100 people with the diagnosis depression and saying “treat them all”. There is not one thing that will work for all of them.
PDA strategies are markedly different to traditional ASD ones.
So to not have the diagnosis available means that services involved in the care of those with PDA. Will be confused, and instead of finding out what will work, they will automatically start questioning the diagnosis.
“But they are sociable”, “talk a lot”, “give eye contact”. Sure because only Kanner’s autism is the ‘correct’ form of autism for us all to work off. Also let us not forget that Asperger originally said that there were no women with his condition.

There is a saying in the autism community….
If you have met one person with autism, then you have met one person with autism.

We need the diagnosis to give a proper and accurate signpost.

The term ‘label’ also implies that it is somehow ‘not real’ or ‘less’ than a physical disability. The same as the term ‘functioning’ gives the impression of less autistic. The person still has autism that is the thing to take from it.

Another thing that I have learnt in my tumble into the autism universe,
That there seems to be a culture of “outautisming” or ‘autism spectrum top trumps’.
The facts are clear. Each of us with a child on the spectrum has a tougher time than those whose children do not have special or additional needs.
I won’t for a minute try and understand the anguish a parent faces because at 6 their son hasn’t said they loved them.
The same as I hope some other parents don’t think that just because dinky wants friends, can make eye contact and talk for Britain, that my life is easy. It may be easier than theirs, but we all have our own battles. The point is autism spectrum disorder is what is stopping our children from being able to interact with the world the way NT children do, and the world doesn’t make sense to them.

The term label has been banned from one PDA group. I say ban it from all groups, meetings, Ect where the difficulty is hidden/developmental/neurological in nature!

None of us are trying to label their children…. One thing that will probably stick with me for a long time in the case of dinky…

Who on earth would want to ‘label’ their child pathologically demand avoidant?

Not me! However if the boot fits!

small edit

It was pointed out by one of the parents that…

Labels are also varied and not just diagnostic ones… I’ve added some of her examples…

It is true….My dinky has had lots of labels given to her by ignorant people

‘Spoilt brat’
‘Little S**t’
‘Weird’… And the list goes on… Oh and these have all been said by adults!

And my parenting has come under fire…

‘Awful parenting’, ‘lack of discipline’, ‘lack of rules’ ‘pandered parenting’

I’d rather my child diagnosed (not labelled) PDA than allowing any of the other ‘labels’ to stick!

Integrated services lady meets dinky again

She is definitely my favourite professional so far!

Again my parenting is ruled out of why dinky is the way she is!

Lets start from the beginning.

Today integrated services woman wanted to meet dinky again before the TAC meeting in July.

Dinky came home from school nicely with her now and next. (Which was done by the senco yesterday! :-0 wow) Today it was done by the head of early years whom I have now taken a big dislike to, after Tuesdays mess.
We came home and dinky span for a few minutes and then sat playing with playdoh.
Dinky showed her the playdoh, then a glittery ball, she was almost bouncing off the walls as much as the ball was!
She showed the lady her newly decorated room and most of her toys. Dinky wanted to play hide and seek and the lady did it the first time and said no the second time. Dinky pleaded but the woman said no.then she said she would if dinky put her book back. She put her book back!!!
The lady counted, dinky hid. It was funny to watch.
Back downstairs the lady said she wanted to talk to me. Dinky was not happy with that. She then said she wanted tv and when I said no hit me. So in this ridiculous attempt at consistent NT parenting I put up the warning. She hit me again. 2nd warning. Then she put the tv on, and wouldn’t step away then threw the remote at the wall. 3rd warning up to her room.
She spat, bit my leg and was punching me whilst screaming. She was trying to get out of her room and I was putting her back in. Once she had done her time she came out, ran downstairs without waiting. She went under the table, the integrated services lady tried to talk to her and she was saying “I can’t hear you”! Then became intent on punishing me for being ‘mean’. The conversation she was having with the integrated services lady was interesting. According to dinky, I leave my toys out for her to step on. However she was saying this as she was putting hard bits of playdoh on the floor for me to step on! She carried on the conversation about how mean I am for not letting her have things she is not supposed to while she was taking down the pictures of school from her visual timetable.
Dinky was then swinging on the doors and banged her elbow. I comforted her with a hug, the integrated services lady asked if she liked hugs. “No, not really.” “Are you sure”, “yes, I don’t really like hugs.”
Which is true, she tends to be like an ironing board, I hug her and she puts her head on my shoulder. I only get her hands round me if she wants something or she is trying to comfort me when I am play crying.

When we were talking the lady said that it is not a parenting problem as I am doing everything I possibly can. She did mention consistency. The only thing consistent is how short term things work with dinky, I am going to keep going with the warning system. Even if it doesn’t work at all it will prove I can be consistent, dinky just doesn’t respond!

We have a date for the TAC, which I think will be extremely interesting.

There wasn’t really much else to say. She only came round to meet Dinky again as she can not turn up to the TAC having met her once. Twice probably isn’t that much better, but she has seen dinky explode, she has seen her control, demand avoidance, role play, in her own world. She has seen all this and seen it in the home environment so it isn’t just my word when it comes to the paediatrician appointment in 10 days.

It should be interesting to see what happens tomorrow at school. They still haven’t broached the trip with me. Also, as of yet, no one has mentioned my letter, however I do not think the senco being in dinky’s class with her doing the now and next at home time was a coincidence when it has been ‘in use’ for 2 days previously.

Well, it will not be dull leading up to the 8th (paed) and then the 11th (TAC)

Probably isn’t

A whole new level of incompetence!

Will this ever change?

I very much doubt it!

Today’s pick up from school was beyond a joke!

Here is my draft letter to the head…

I am writing to you because I am concerned in a number of levels and am extremely upset and angered by events that occurred today,
1)The now and next is not being used at home time, which according to the I.E.P I signed, is when it is needed most. The last symbol on ‘next’ today was ‘lunchbox’, which also isn’t very handy as Dinky has school dinners and asked why she doesn’t have a lunchbox
2) Dinky was so wound up at home time, it took one word from me for her to throw a cup of pencils, hide under a table in x class and physically attack me.
3) I was shocked that head of early years felt the need to interfere in my parenting then ask if it was ok…. in front of Dinky

This in itself has a number of implications
1) I don’t appreciate being undermined in front of my 5 year old.
2) I find it astounding that one of your teachers would have a conversation where I could undermine her in front of a 5 year old she already finds, has an inability to follow direction, and has no understanding of authority.
Which put me in a very difficult predicament as I did not agree at all with what she was doing or saying, but I didn’t want to undermine her either.

Yes, Dinky was head butting my hip and hitting me. It was by no means over and borne out of anxiety that had built up during the day, and the fact that Dinky has worked the park into her end of school routine. She doesn’t have the tools to work out the right way to respond or how to take it out of the equation. I do not yet know how to help her with this. This is why the ‘now and next’ was put into place.
Head of early years demanded that dinky apologise and then proceeded to tell dinky (after dinky had said I don’t love her), that I wouldn’t love her when she is hitting me.

How DARE anyone tell MY child when I do and do not love her! That is not for them to say. I love my child NO MATTER WHAT! Especially when she is crying and anxious. The last thing she needed was to be told that I wouldn’t love her right then because she hit me.

I tell Dinky that I do not like the behaviour, but I love HER. She is not bad, her BEHAVIOUR is.

For an establishment that teaches children I’m astounded that this would be said at all! All children need to know they are loved at ALL times.

The worst time to discipline my child is when she is obviously upset. She needs to be calm in order to process the information.

It doesn’t get much better, I was then told to disappear round the corner. Aside from being made to feel like a child in front of my own child, Dinky is extremely bright, she knew I was hiding round the corner so she didn’t respond the way head of early years wanted her to. She then proceeded to physically hold Dinky. There was no need for physical holding, and it was at this point I was told she was held during the day against her wishes.

I have NOT agreed to this. This holding is tantamount to restraint, and restraint should only be used if truly necessary. Which this wasn’t. And I would like a full account of why Head of early years felt the need to ‘hold’ Dinky earlier in the day.

It is things like this, complete mishandling, that leads to a progression in the undesired behaviours.

On being held, dinky spat, both at me, and head of early years. If Dinky is held against her will she will get angry and frustrated and not be able to verbalise appropriately. If your staff get hurt in the process of an unnecessary restraint, then that is on them, and not the 5 year old.

Then my parenting was questioned.
“Do you give her consequences at home? It is what we are doing in school.”

Ok, again, undermining me in front of my child. Also, my parenting is not the cause of dinky’s issues. I am by no means the perfect parent, but you would be hard pressed to find a perfect parent anywhere in the world. Integrated services lady has already dismissed any parental cause, so has the GP who referred to the child development centre, to be assessed for Autism spectrum disorder.

I don’t know what part of this your school do not seem to be able to understand.
A GP generally doesn’t refer for no reason and the over run child development centre do not offer appointments if the questionnaires do not reflect the GP’s speculations.

I know dinky is new to your school, but I promise that this wont work and forcing her to ‘make the right choice’ when she is obviously in distress or not ‘herself’ is only going to make her worse.
How your staff are not aware of this is beyond me.

If the intention of your school is to carry along this route until I have it in black and white a year or so down the line, then I fear for Dinky’s well being.

Take this letter as an official complaint and I expect (for once) for correct protocol to be followed.
It is one thing to disregard the possibilities of autism spectrum disorder, treat their parent like a child and not understand the implications of undermining the parent or allowing an opportunity to be undermined in front of the child. However the worst 2 things are restraining a child (which is what it was, which ever way you dress it up) in front of a child’s parent with no cause and no consent, and telling a child that their mother would not want to love them when they are hit.


Dinky’s mum

I’m not going to send this as it is not the finished article, I am still far too angry and far too emotional about it to word it correctly.
But this was my school pick up!