Legoland and Soft play clash.

Thursday we went to legoland.

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Now for those that don’t know, Dinky is massively into lego at the moment, specifically lego movie, lego avengers, lego batman and lego city. (In that order)
So a trip to legoland is like visiting sacred ground. The whole way there she was anxious/ excited.
Note : When I say Dinky is anxious, I don’t mean the, scared upset by everything anxious, dinky is more the- hyper, spinning, verbal stimming type of anxious.
Every time we had to wait for anything she was spinning, so waiting for the cab= 5 minutes spinning ( no late bus this time!). Waiting for the tickets= spinning, waiting for the train= spinning! waiting for the next train= spinning, waiting for the shuttle bus to legoland= spinning. She did get some odd looks, but I have grown used to them, and she doesn’t notice at the time.
She had lunch on the bus as it was 11.30am and I knew we would not get a chance to stop once we arrived.
As we approached legoland Dinky was so happy! All the entire bus could hear was “look a lego figure” over and over, and “dragon”, “letters!” Ect. Super excited we get in and dinky makes a bee line for the shops. So we have a look, I got her the 2 key rings she has wanted for a while and we couldn’t find before.
She saw a dinky sized lego wyldstyle, emmet, and batman, and I took pictures of her with all 3!

Then it was off to guest services to get her ride exit pass. The one at the ‘beginning’ was busy so we got on the hill train down to the other one.
When we went in, I produced Dinky’s paperwork and the lady was quite happy to issue us the card with the 10 tokens, when it came to trying to stamp Dinky’s hand we had an unusual dilemma. Dinky was too busy playing with the lego bricks in the medical room. Of course the more the woman said “come over here so I can give you the stamp” the more avoidant she became. When her speech was more immature I had to step in. I went over and helped her build the red tower and then I asked her if she would like a special red stamp so she doesn’t have to queue up while we have the tokens. Of course dinky wanted the stamp, she hates queuing.
So we got our stamps and off we went.
Dinky was running off the reins to each and every lego character!
We went over to the dragon ride, but were told it wasn’t open yet, and that it would be 10 minutes. Dinky was not happy. She lashed out a few times and then went into the shop opposite and played with the toys. I managed to get her to go on the dragons apprentice first. There was a small queue, but I took dinky to the exit and we got on for exchange for 1 token.
Dinky loved it but wanted to go on the big dragon. So we headed back and it was open. We went up the exit and there was a very small queue, the man didn’t take a token but let us on.
There was no queue when we were supposed to jump off, so dinky ended up asking them to let her keep going, they agreed as long there was no one waiting for our seats. We managed 5 straight rides on the dragon before I had to negotiate going on a new ride!
We finally came off and went on the pirate falls. Dinky said we were not really wet, so we had to go again. Which we did as again there was no queue.
Thoroughly soaked, she decided she wanted to go on the cars. We had spoken about the fact she was now old enough to do the bigger cars. She didn’t like the waiting and the constant instructions from the staff, however she found a police car and was very happy. So happy that she did not want her turn to end. We hadn’t done too badly leading up to this, the first meltdown of the day! I had to carry her off the mini roads to the horror of some of the staff and some other parents. However the mother next to the gate standing next to a Mclaren major didn’t batter an eyelid. I managed to get her to a quiet safe spot and she calmed down in time.
We went on the boats, which she steered, mostly into walls and other boats!
We went on the submarine, which she loved.
On the way to more rides she saw a lego monkey, lego giraffes, lego zebra, lego rhinos, and was one VERY happy girl.
We had a few more rides, and then the sleet hit. It was horrible, we had gone from being warm and comfortable to wet and freezing. We made our way to the imagination centre, but it was closed for schools use only. We ended up in the cafe until the 4D show started.
We had to call it a day because she was cold and irritable and I was feeling the same. However she went into complete meltdown and couldn’t explain why until she had calmed down.
It turned out she was going to miss the clutch powers 4D show.
I agreed to buy her some SMALL lego toys from the big shop. We got mini figures which she made, the lovely staff managed to feel the lego movie packet to find her a wyldstyle/Lucy figure that she needed for her collection, among other things.

More waiting at the bus stop led to another meltdown as there was nowhere to sit.

The train journey home was much the same as it was going there. We had to wait 10 minutes at one platform and dinky span the entire 10 minutes, which is normal for her, but as the train approached and she stopped and walked the few steps next to me, I heard comments about how there was no way Dinky should have been able to walk in a straight line!
On the last train dinky just started laughing for no apparent reason. Her laugh is gorgeous, and she managed to get a few people laughing too and lots smiling, a few people stood up to see where this laugh was coming from. 🙂

The next morning was a PDA coffee morning at a soft play centre. I didn’t want her to worry too much before hand, so I left it quite late to explain that we were meeting other people, but that she didn’t have to talk to them, she could go play if she wanted to. I knew at least one person was bringing a child, a girl who was 9.
We were the first ones there and Dinky was having fun, but was a little bored as there was no one to play with (boss around). When the family with the child came, dinky was happy to play, and they both seemed happy to play together in their own way. Unfortunately this didn’t continue. Two children with PDA in the same place trying to exert control was always going to end badly. It was Dinky who was the aggressive one as neither of them could agree and dinky was unable to hold in her frustration. I tried to talk to dinky about it, I reinforced the rules about hitting the best I could, however at this point I may aswell have talked to the wall, as she was in no mood to listen and process what I was saying. I felt bad for the other child as she did not strike Dinky once, but she was smacked and jumped on.
I did however talk to dinky about it later in the day when she was calm. She did understand that she shouldn’t hit, but said she couldn’t help it, she just got mad. These conversations never end well as she doesn’t have the ability to explain how she feels, and she just gets frustrated at both her inability to explain and that she can’t help it when she lashes out.

It is a hard thing to parent. She knows she was wrong, and punishments just are not effective for a child with PDA.
Hopefully in time she will be able to control herself better.

Today has been a more chilled out day. She has played for a while on her scooter, and has been very calm and relaxed.

Delays, changes in expectations, meltdowns, meerkats, and a tiger in a tree… Aka a day out!

Monday Dinky asked “can we go see animals?”

So after checking London Zoo and then thinking about chessington, it works out cheaper to take her to chessington and see the animals there as they have all the ones she wants to see. (Plus when she gets bored we can go on the rides).

So yesterday we got ready and set off. We waited at the bus stop, and waited, and dinky was already spinning, which is never a good sign. By the time the bus turned up, it was looking tight with getting to the train station.

We tried but we missed the train. Which made Dinky anxious, she was bashing my arm against my leg while I figured out how this would change our plans. We went to get a snack and then to get the train tickets. The only way to get there without ending up on the slowest train known to man (and woman), was to got a couple of stops and change. We had done this before so Dinky was ready for it, but she was annoyed that she couldn’t get her 2DS out as we were not going to be on the train for long.
Waiting on the platform dinky was spinning and making random noises, the train was late, which meant we could miss the connecting train. Luckily we got across to the next platform in the nick of time, but the platform was busy and Dinky was getting a little hyper, jumping and trying to spin while the train pulled in due to her rising anxiety.

The train was busier than expected. Dinky wouldn’t sit down as “not near strangers”, a lady moved her stuff off a seat and said “my name is Ellen and now I’m not a stranger”, so dinky looked at me, and then looked around and sat down. She got her 2DS out and then made friends with Ellen. She showed her how to play her lego games on her DS and was telling her all about the animals she wanted to see.
We changed trains, luckily this train was quiet. She played her 2DS all the way to chessington. She wasn’t happy with the demand of putting it away when we got close and began hitting out. I tried to reassure her, and we walked down to the theme park.DSCF6630 (Dinky took this herself!)

We had spoken about the penguins, and the penguin presentation and she really wanted to see them. When we had made it through the gate, the talk was due to start in under 10 minutes so we went straight to penguin cove. We saw the penguins, but they were different to the penguins they had at the London aquarium. So she was put off, and was talking like a 2 year old, which is a sign of impending meltdown.
I tried to get her to stay for the presentation by telling her it wouldn’t be long. I said “the penguin talk is in five minutes”.
Dinky replied “vampire ride”.
The staff member came up to her and said “you will miss the talk, don’t you want to learn about penguins?”
Dinky put her head on my hip and shouted “NO learning!”
She then pulled on the wrist reins in an attempt to get away. The guy just stood there, he seemed completely baffled at how his attempt to get her to stay and watch the penguins went the opposite way!

Monday when I was working out what we were going to do, I saw that a new amazu attraction was up and running, a tree top adventure in the home of the monkeys. It said it was open.
Well, when we went to go see the monkeys we were told it was shut. No penguin talk on top of closed monkey walk led to the first meltdown of the day. Of course this was on the cards from the moment the bus had been late.
Dinky was making noises and lashing out, luckily it only took 10 minutes to calm her down enough to carry on. I told her once we had the band she could choose what she wanted to do up until lunch and then we could go see the animals she wanted to see before they fed the tigers at 2.15 pm.

Dinky saw some animals in the little zoo, so we went in, there were ducks, chickens, goats, donkeys, ferrets, skunks, and small monkeys.

DSCF6640 (Dinky took this picture of the ferret)

 

We went to the adventurer services, which luckily have Dinky’s provisional diagnosis letter on the system and was the same person who took it down last week so he just gave her a wrist band to queue jump and me the card that goes with it.

We went to the vampire ride and dinky seemed a lot happier. She then wanted to go on the bubble works.
She seemed happy enough on the way round. Looking at the ducks and the lights.

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We got to the ‘bath time’ bit and Dinky was so very excited. She loves the splash and then the water over her head.

Except, there was no water over our heads. The whole way to the end she was saying “No water, where is the water?” over and over. At the end she told the lady there was no water and she said “it is broken”. Dinky then refused to move. I don’t know what is going on in her head, my best guess is that she thinks if she stays still things might change. I left her for a few minutes and then tried to explain as people were due to get off the little boats. Dinky then screamed at me and began whipping me with her wrist reins. It took some doing to calm her down.

Then she was messing about in the gift shop because for some reason the camera didn’t take a picture of our boat. Cue small meltdown.

So we went to the scorpion express. There was no fire- which led to an outburst. By this point I seriously wanted to ask them if they had actually serviced any of their rides over the closed season! They have only been open a week!

She went on the carousel before lunch.

After lunch we went on Zufari

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Dinky loved taking pictures like a true explorer, so much so they let her go round again so she could sit the other side of me and take more pictures!

We then went down to see the ostrich, zebra, Fennec fox and then the Meerkats! They have this little tunnel and then a dome to see them…

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Dinky loved it, especially when one came over and sat on top of the dome above her head!

We then headed over to the tiger feed. Which was amazing. We stood waiting until the people had left the enclosure after tying horse meet to a tree and post. Then the doors were lifted and two beautiful tigers came bounding out. Dinky was amazed as the first tiger jumped the tree ripped off a piece of meet and began licking it right in front of us.

10013809_10152259545351760_1747681537_n It was truly amazing.

Dinky loved watching the tigers.

 

We then went on rides until home time. She met the octonauts and some characters from Madagascar. We had a few more outbursts and meltdowns over rides she was either too small to ride on or were shut. But we also had some lovely moments. She was able to sit at the front of the scorpion express which really made her happy as last time the woman was adamant we HAD to sit in the middle, and she managed a total of 10 rides on the vampire as the person running it let us go the short way to the ride exit entrance for disabled people that cant queue after the 2 rides and off rule.

Dinky was quite anxious on the way home, especially on the second train as it was packed!

She said she had a good day, but honestly, I was so shattered- I hope never to repeat THAT version of a day out again!

 

 

 

 

Am I doing the right thing? Yes. No. Maybe.

I have had a few people question my choice for Dinky of taking her out of school. Some have agreed once I have explained, some just do not have the capacity to understand, and then there are those that think she ‘can’t be that bad’ and should be in school, and there is one (there is always one) who thinks that the school should be using inclusion because it should work for all kids with additional needs. (Rolls eyes!)
Why does it bug me? For the same reason that the school bugged me when they would say that there was nothing other than behavioural problems, it made me question myself.
No one ever knows if they are doing right or wrong thing by their kids (unless they are doing something illegal, then they do know they are wrong).

Having a child who, most professionals describe as, complex, means no one really knows what on earth they are doing. Which is why it is so important to get the PDA diagnosis as then at least we have a signpost that everyone can follow. I already do, some didn’t, which left me with the uncomfortable question- do I stop as the different rules and boundaries confuse her or carry on knowing PDA strategies work? As with anything I compromised, I did as much as I could to alleviate her anxiety, while maintaining a certain level of expectation with minimal amount of demands. Was I doing the right thing? I hoped so, it was certainly better than what the school were doing.

What about taking her out of school?
The law says she should be in school, however she was struggling and so were the school and it was stressful for everyone involved, the adults have to suck it up, but it is my job as a parent to protect her, the only way I could do that would be to remove her. So I did. But that doesn’t mean it is definitely the right choice. The professionals I have spoken to all advised against it, but none have been overly bothered, and that includes the SEN department and the education welfare officer.

I feel I’m doing the right thing, but I cant help questioning myself when others are questioning me.

I have had certain things said…

dinky is missing education

My response was: if she was being educated, one of her targets to work towards wouldn’t be ‘to participate in 75% of learning activities’. They had to drop one of the three letters from her October IEP as she hasn’t mastered any of them. So why put her through the stress of school when she wasn’t learning?

you can’t take her out for your own benefit

Once I stopped laughing! I replied: my benefit? I could use the school for 3.5 hours a day, 5 days a week free childcare, she would get lunch and be entertained (sort of, when she isn’t she tends to be hanging off the gate!). Instead, my food bill has doubled, I have to find ways to keep her entertained which isn’t always cheap and I’m blooming exhausted! My benefit! The only thing I benefit from is not having to deal with the muppets at the school!

you can’t take her to Legoland! She is supposed to be home educated

My response: first of all, I NEVER said I was home educating! I said I was taking her out of school until a suitable placement is found. If a team of qualified teachers can’t teach Dinky to learn to write 3 letters of the alphabet in a whole term, what chance have I got? (That’s not to say we haven’t done some bits, because we have, just not a lot!)
Secondly, who is to say that I’m not teaching her on a Saturday and taking her out in the quieter period during the week? Surely if I was home educating I could set my own times and days, I wouldn’t be bound by school hours. Maybe I was having an inset day!

There are more but I got fed up of explaining my decision! I have taken her out and it is exhausting and expensive, but thoroughly worth it. Sure it hasn’t cured her, she still has PDA (even though we still only have it written provisionally).

Then there are those that agree!

I have taken Dinky out a lot over the last few weeks to parks and to places she really likes and taken lots of photos, which, end up on Facebook. People who have met Dinky during term time who we’ve bumped into have commented on how much calmer and happier she is. People have commented on the photos- how relaxed and happy she is. This really helps me to see I am making the right choice for Dinky.
She is calmer, happier, and much more relaxed.
That is if her mum doesn’t do very stupid things, like prepare Dinky for a day trip to Legoland knowing just how much going there would mean, getting the train, talking about which rides she can go on… Only to be standing outside Windsor castle waiting for the shuttle bus when a Taxi says “Legoland is shut today”!
Well, that would not result in calm, happy, and relaxed dinky. Nope. On Wednesday it led to meltdown! Tourists and residents of Windsor alike saw Dinky not so happy! The only redeeming factor was that Chessington was open and they have the bubble works and the vampire ride so nearly 2 hours later we arrived at Chessington! Oh well! We spent the 4 hours before it shut on 3 different rides. She managed 8 goes on the bubble works, 6 goes on the scorpion express and 5 goes on the vampire ride. She has a new phrase she has picked up, when I ask her if she liked/s something she says “are you kidding me? It was epic”, which she uses for EVERYTHING that she likes wether she just liked it or absolutely loved it! I think it is adorable!

Today I had another one of those “is she really autistic?” Moments.
That was until I had a few “you may be a parent of an autistic child when…” Moments this afternoon!

(Having to say “the bus is due in 2 minutes, so that is 2 minutes left to spin before it comes”
The meltdown when I said “we are going to a different supermarket”
Watching her spend over an hour playing with her completed collection of lego movie cups by lining them up in many different ways.)

I’m so tired I have forgotten the point to the post!
Dinky is refusing to take her melatonin- another downside of demand avoidance!- so is up until 11pm-1am, is up in the night some nights and up any time between 4 and 7 am. Possibly anxiety related as, as much as she wants to go out to places she loves, there are expectations, demands, waiting, travelling ect. Her sleep is no way near as bad as it was when she was at school though!

Dinky is off to play at what might be her new school with the special needs group tomorrow! I can’t wait to hear what she thinks of it! 🙂

Until the next time… (And hopefully it makes more sense!)