One of THOSE days

You know them days, the ones where you wish that you hadn’t removed yourself from under your duvet!

Ours started at 3am. Dinky woke me up as she scared herself by knocking her 2 foot dancing Simba on the floor. so then began the duvet battle, and then that age old question of how do they always manage to connect the coldest parts of their bodies to the warmest part of yours… while they are sleeping!
So 7 am comes and I can not keep her in my bed any longer. She goes off to terrorize the guinea pigs, so I call her in and play some tickle and rough play games with her. (Then she fell off my bed onto the duvet and pillows that ended up down there…. and I laughed… lots, which she was NOT happy about it!). Eventually we got up and she had breakfast, and because I told her that we had to get ready to out to the aquarium (which she asked for… and pronounced correctly!), she ate slower, and we were not ready to go out until near on 10 am.

So we have ear defenders, fiddle toys (which we have changed 5 times), a seahorse toy, the Ipad and various snacks. I also saw her with my old camera, so let her take one of the guinea pig, so let her take it to take photos of our day out.

We hadn’t got past the end of our road when Dinky saw the dogs that live nearby. She got the camera out and took pictures of them, then stroked them, and wanted to play, but I told her we were going to see lots of animals, and the dogs were on their way home.

We got to the train station to find that the trains were all delayed. Having brought the tickets online the day before I was pretty annoyed (not that I could have changed the plan on Dinky).

First train, all good, there was lots of noise at the station waiting for the second, so Dinky put her ear defenders on. She also had her badge which says ‘may be experiencing some special needs technical difficulties’ on her at the time. When the train rocked up it was packed beyond belief. We found a carriage that wasn’t as busy but there were no seats. Dinky was getting agitated and sat on the floor. We ironically were in the priority seats section. After she was on the floor for a good 10 minutes she wanted her ipad out and but I had to say no. Eventually I gave in and do something I have never done. I got Dinky’s disabled persons railcard out and asked someone to move for her, which they did.

So she had her ipad out and was happy, although I could see her getting agitated, she had taken the ear defenders off and there was a baby crying nearby.

When we got off to get the last train (which we wouldn’t have done if not for the delays and cancellations), she went into meltdown, the station was packed, there was tannoy announcements, she wouldn’t put the ear defenders back on. I tried to distract her, but nothing. She was shouting and screaming and hitting. When she finally started moving again she was angry, she was screaming “get away from me, don’t touch me!”. Which is fine, but in central London, with over cautious security it really wasn’t the time. One of them came over to ask her if she was ok, to which I replied “she is under assessment for an autism spectrum disorder, she will be fine again soon, but you are NOT helping.” He gave us some distance as she kicked out at him. I managed to calm her, to find she was hungry to add to the other sensory bombardment. She happily walked with me after a cuddle, and the guy couldn’t believe his eyes… Autism spectrum awareness for him (and for all those muppets staring at us!)

So we got the last train and someone read her badge and jumped up and let her sit down. which was nice. We made it to south bank. We walked along, and now dinky was getting excited, she wanted to see the turtles and the penguins. So she was almost pulling me along by the wrist reins as soon as she saw the sign that was on the picture I showed her. At the entrance I was looking for the priority entrance and dinky ran through a gap, leading me to bump in to a man at the entrance as I tried to pull her back this is the conversation

Me: so sorr…

Man: go on, go first if it is that important to you, but in this country we queue!

Me: I am sorry, I was pulled into you as I am attached to my 5 year old on wrist reins.

Man: You fool, the queue is there.. I have paid for priority access

Me: Well, we also have priority tickets, because my daughter cant handle queues. Oh and DONT CALL ME A FOOL!

Man: no go on, you go.

 

Dinky just wanted to run in, so I went past him. I would have gone after him, but he wanted to look big in front of his partner and kids, fine, but I was going to take his offer, however rhetorical his offer was!

To his utter smugness, the person opened another line and he walked past us and smiled. I smiled back as his horrified wife pointed out Dinky’s badge.

I hate muppets like that.

So we got in and Dinky gets her camera out. I must admit she loved taking pictures. We looked at all the fish and most people were ok with her charging around with me attached and being pulled along with her.  She touched a star fish, spotted the sea creatures we mentioned on the bus, she loved the turtles and the penguins. Actually she was captivated by the penguins, who seemed as if they were preforming for the kids as they kept jumping in and out of the water. Both Dinky and a 19 month old were hysterical every time they saw one dive in. It was one of those moments that got me. She was next to kids her size, and while they enjoyed it, they were able to contain themselves. However she was more along the containment levels of a toddler. Which obviously, is just her, but hits you unawares.

We saw the sharks, and the tank with nemo and dory. (There will be a whole generation that just call clownfish nemo!) We saw piranhas, jelly fish, seahorses (to which Dinky was showing them her pink seahorse squidgy toy and making odd noises she believed were sea horse noises), and cat fish. She was taking pictures and having fun. The shop was manic and so was Dinky. I said she could have one thing, if it was a packet it counted as one thing even if there is more inside (we have had this literal issue before!). First she picked up a teddy penguin, and a teddy turtle, she decided the turtle was cuter, so put down the penguin, then found other toys, and picked up the foam swords, and then a shark grabber that normally breaks in 5 minutes, then she found the thing… She found a bag of plastic toys, a shark, jelly fish, turtle, penguin, ect ect. I was happy too, it went from £18 down to £5… not complaining! 

She was not happy as I had to direct her away from the glass breakables and toward the tills.

We went for lunch, and then she saw a mr bean performer so we watched him and other performers for a while. Then we went to the park near the London eye.

She did really well.

We got the first train fine, again the second train is where we encountered the next major meltdown. She was getting silly on the platform, and I had to lift her onto the train (I would have waited but the next one wasn’t for an hour). She then wouldn’t sit down. That was it, screaming, throwing herself around, hitting me… at first I got some dirty looks, however when her bag came off and the guy could see her badge he gave me a reassuring smile, which was better than his scowls. The poor gentleman on the opposite side of the table didn’t even glance in our direction. She got under the table and was banging her head on the table, she was screaming a high pitched scream and began biting. Eventually she calmed enough to sit next to me.

She wanted a drink and something to eat.

She lay on my lap and was quiet until we got off. Then she was really good. We had to stop off in asda on the way home to get snacks for her trip to chessington with her group tomorrow, she was as good as gold.

We got a ccab back as she was adamant she was going swimming, as it was Wednesday.

So We came back for an hour to have dinner and get her swimming stuff before heading out of the door. We got there ok, she got dressed ok. She messed about mext to the pool, but nothing major. I went up and from up the top it looked like she wouldn’t use a float unless the teacher did, but then the instructor was doing lots of swimming today. As it turned out Dinky was the teacher today! Which was brilliant, they had been reading up on PDA!

Dinky pretended to be asleep when she got out of the pool, but did come with me, was a little manic running around the showers. However she let me get her dressed without an issue! First time since the last holidays!

I got her a treat, and she refused to try my jelly as she said “too wobbly”. It was a little more difficult getting home, but nothing major. She let me dress her for bed and went up ok.

Long day!

Tomorrow, she is off to chessington, which should be good for her!

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Paediatrician says “I think she definitely has PDA”

The conversation was as follows (ish, I must admit when he said he thinks she definitely has PDA my mind went into a sort of mental jig!)

Dr x: I am returning your call, that you wanted to talk to me.
Me: yes, firstly, Dinky’s melatonin, she wakes up in the night now, is there anything I can do. School and the other professionals said I should ask.
Dr. X: (rambled on about how every human needs melatonin to go to sleep and we produce it naturally… Blah blah blah)…. But we can discuss that at her next appointment with me. The reason I phoned last Monday was that the Friday before last we had a meeting. Myself, head of CDC, and CAMHS. I brought Dinky up and told them I think she definitely has PDA.
Me: (completely taken aback by this as I thought he was going down social communication/ ADHD route) erm, ok.
Dr X: I said to the consultant psychiatrist “please please see this child who has PDA.” They don’t normally see children so young. I have referred to him as he can meet her needs better than we can at the CDC. I have written it all in the letter and sent him a copy of it. You should receive it later this week as my secretary was away last week.

There was more to it and I’m sure he mentioned PDA a few times, and behaviour too. But the things that resonated were mentioned above!

I probably shouldn’t feel as happy as I do, but I have been coming up against so many brick walls, it is like I have finally found a way through for Dinky.
I am happy that this letter should come before she goes back to school, I am going to enjoy telling them that I have been saying this since day 1 at the school, and instead of backing me and supporting her as a child with PDA, they went behind my back to assess for attachment disorder and ODD via their boxall profile and tried to blame my parenting for how dinky is! I will say that now I have professional backing, can they PLEASE use PDA strategies with her in order to give her the best chance possible.
Also this letter could not come at a better time as someone replied on the dinky and me Facebook status update, as the evidence from school needs to be in by the 5th November and this letter will really help with the statement, and thus help get her into the special school.

So good news on the road to diagnosis.

Today dinky is dressed as a vampire for the soft play special needs Halloween party! So in a little while I will do her face paint, have wipes and face paint at soft play to reapply as she will no doubt accidentally wipe it off and meltdown that she doesn’t look like a vampire. However,from this point forward I am not allowed to use her name… She is vampire girl. I don’t quite know how that is going to go down at the party with one of her ASD friends as he will say she is Dinky. But it should be interesting!

Thank you- all of you that follow the blog and leave such wonderful words of encouragement… Today is a victory!

My visit to the Special school

Yesterday dinky was happy(ish) to go to school for the last day before the half term. Although she is getting by me a little with her new ultra stealthy ways of distraction! This morning was a discussion about why she can’t take her box of sensory/fiddle toys and an assortment of combinations in which she would take just two. I put a PDA leaflet into Dinky’s contact book… I’m sick of her being treated like a difficult child, not a child with difficulties. It will probably go down like a ton of bricks but I’m past caring now.
Eventually we were out and then after “my tummy hurts” and “my feet are burning” we got to school and her lovely 1:1 was waiting for her. Dinky was straight into a monologue about the leaves that she saw on the way to school, and that it is no school next week, and how she is off to chessington with her special needs group, she is going on Halloween dressed as a vampire for the vampire ride, to show she is a fan. (I love the fan thing. It is because she asked why we wear our football shirts!)

So I got the bus, then the train, then found the way to the school. The building is new and looked lovely. I signed in and waited for the deputy head. She took me into her office and asked how the statement process was going. I told her we are close to hearing if we are going to get the statutory assessment. I explained the difficulties Dinky was having at school. I asked about how much experience the school have with PDA. She said they have a few children with PDA at the school. She said they have settled in well and enjoy being there. Which is great, and i think that is testimony to the school if PDA kids turn up happily!
She asked more about school and Dinky. I explained that it was hard to see her struggle so much after school. She seemed quite knowledgable on PDA (BIG BONUS), and sensory seeking behaviour. I explained that the school wouldn’t let her have her new sensory timer in her tent. And she asked about Dinky’s sensory needs. I told her we are on the long waiting list for OT however from one OT I did speak to, it sounds like dinky is a sensory seeker, and I mentioned Dinky’s chewing of everything remotely rubbery and she asked if dinky liked to bounce on trampolines. Slightly confused I answered yes… Dinky loves bouncing, although she does it on my sofa or on her bed as we do not have an indoor trampoline. She said it was actually surprising the a punt of children that chew and like to bounce. She said for kids like dinky they would have an OT set things up for her, and the school would do sensory snacks (let them do some sensory activities and then go back to their classroom).
We then joined a husband and wife duo with a social worker on a tour of the school.
I loved the fact that there was an outside area attached to each classroom. Opposite were calming rooms for those children who needed class breaks. All the children we came across were happy. We went into an autism spectrum condition classroom and in all honesty it looked like it would be fantastic for Dinky. Most of the classrooms were devoid of clutter and as dinky is one of these children who are easily distracted by anything, I thought the individual work stations would suit her. There was a clear now and next and not too much, in terms of demand.
They had a nice sensory room with magic carpet (Dinky’s second favourite after school activity other than swimming). I was falling in love with the school! The deputy and all the staff were lovely.

I asked questions and they allayed all my fears. The biggest pull was that the school would understand Dinky and see the issue that causes the behaviour and not just the behaviour itself. The school would do a behaviour plan and find out what the triggers are and how to de-escalate things before things got too far. The school is equipped for bright children and offer a range of GCSEs but also other courses which would be accepted at colleges.

It seems to be a much better solution to Dinky’s current school.

I collected dinky from school, she was ok, she was asking what we were going to do next week. She was extremely happy it was half term!

I was supposed to get a run down of how dinky came to be in the puddle on Wednesday, and the response in her contact book was pretty useless. The teacher explained Dinky was not doing as she was told and tried to climb out of the window, nothing was mentioned about the puddle. Muppets.
I have a form to sign for the social communication team to go in.

School and swimming

When I went to get dinky from her classroom today she wasn’t there. So I waited, eventually the teacher (who is rapidly becoming enemy no.1 as she is such a dismissive and sarcastic person!), told me that she was with the deputy head. Well, I am not surprised, it is Wednesday and that means she found a way to escape doing as she was meant to. She seems to spend Tuesday, Wednesday, and Thursday afternoons with a member of the senior leadership team! Today was no different.
Her contact book says she refused to come in after lunch, eventually went into PE But climbed over everything and spent the rest of the time with the SENCO. However, when she arrived with the deputy head she had apparently been wading in a massive puddle in the playground (that covered her ankles), and she had been doing it for quite a while, so she had wet socks and shoes. She then took them off and ran in, scraped her big toe and grazed it. Well, Dinky and blood don’t mix. )She broke her finger, nothing, tiniest bit of blood and the world is ending). So they take her to medical, get her a plaster and then dinky put her wet socks back on and wouldn’t take them off again. So she came home with wet socks and shoes.
I had even to town earlier in the day and managed to get dinky some sensory toys and and black out tent with light stick and glow pad. So she can make shapes ect (dinky LOVES glow in the dark and flashing lights). I was hoping it would calm her down enough after school for her to go to swimming happily, swim like she used to, and get out without too much fuss. (Actually that is a big ask, realistically, it would just be nice to get home from a swim lesson which didn’t include a meltdown or her being restrained!) As it happens she went in for a little bit but wanted to watch a film instead. She was ok on the bus, and even made me laugh on the way there. On the way there is a split pathway pedestrians on one side, cyclists on the other. Well, a cyclist was coming towards us on the pedestrian side and Dinky shouts
‘EXCUSE ME MISTER… YOU ARE ON THE WRONG SIDE!”
He completely ignores her and cycles too close to Dinky for her liking so she shouts
MANIAC
I laughed so much, it was worth the punch for laughing at her! It was so funny!

I remembered her ear defenders (go me! Lol), and she was really well behaved walking towards the swimming pool. She got dressed nicely and went in to the pool nicely(ish, she jumps a little early and always scares the life out of her swim teacher!). I went to the gallery, and dinky was back to 1:1, I think they have had enough of her dangerous antics. It doesn’t mean she doesn’t swim off… It just means that the teacher hasn’t got to worry about the safety of another child while mine seems hell bent on getting into difficulty!
She was a pickle still, but better 1:1 than with the older girl.
She was doing really really well until near the end, and then when it was time to get out she ran along the pool edge, and then hid. She kicked off, and again it was the other swim teacher to the rescue and helped restrain, distract and calm her.

Swimming is becoming a big ordeal. She loves it, but every lesson she has a meltdown.

I can’t wait to view the school on Friday! Then next week is half term!

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