Theme parks, soft play and sensory integration

I saw a post during the week about a family in America being praised by OT for their child’s sensory progress after visits to Disneyland. Their child was sensory defensive and the visits helped with his sensory integration.

Dinky is a sensory seeker when it comes to vestibular (all kinds of movement and balance) Dinky likes nothing more than to be thrown round at high speeds. She is actually quite annoyed by some of the rides for her age as she wants more. She hates being told she is not big enough for the big rides, not just because she hates being small, but also that she wants to experience the ride. She is generally much calmer after rides. 

We went to a small fair a few weeks back and Dinky was just big enough to go on some of the faster spinning rides. The look on her face as she was flung round was just something else! 

Unfortunately Dinky doesn’t seem to be having the same success with her sensory defensiveness. Sound and bright lights tend to be an issue, and only makes the calm last for a small amount of time after rides. 

We tried ear defenders- but they ‘make ears hot’ and the OT thought they probably too constrictive on her head. 

So yesterday we went to chessington, and I gave dinky some sunglasses and had brought her an iPod shuffle. 

We went to guest services and explained that we tried ear defenders but she didn’t like them, a quick call to the ride manager and as long as the wire wasn’t obstructing any safety restraints and I took full responsibility for damage to the iPod and headphones, we were ok for her to wear them on the rides. 

We also have several pairs of sunglasses. (Thanks to our local toy shop selling funky kids sunglasses 2 for £5) So when we lose a pair, we have lots more! 

Yesterday was a lovely day, after chessington we went to our local soft play centre who had their monthly special needs evening. This is a little more difficult for Dinky. Chessington requires very little social interaction with other kids and adults. She speaks if and when she wants to, usually to the staff, oversharing information, especially telling them about her love for Jurassic World. Soft play is a bit different, I don’t get to see many other parents from our local area very often, and these evenings I tend to have a few people join us for a chat. Yesterday there was a mum I’ve spoken to at some parents events and over Facebook, she sat at our table. Now as anyone knows, children with ASD are not generally happy with new faces. This was no exception, and Dinky ended up eating her dinner under the table with her plate on the chair. I tried to explain that this mum was not a stranger but someone I know. Another family we know sat with us and I explained that we know that family, but they were strangers too once. She wasn’t having any of it. 

She also can’t have her iPod in the play frame as it is more likely to get broken. So after a while it is easy to see she is struggling a little, and her kiara teddy is dragged round. Sensory overload also drives up her anxiety, add that to the new faces and the forced socialisation when children want to play and dinky is left trying to control the situation in order to reduce her own anxiety. Unfortunately this tends to be at the detriment to other kids. Not by being mean or controlling of them, especially not at the SEN nights at soft play, as she tends to play with other kids who also either have a diagnosis or are suspected of having PDA. So she turns into the rule police. Which is great except Dinky is unable to apply those rules to herself and quite rightly comes across as a hypocrite as she is telling the adults about the rules their kids have broken, which doesn’t help her relationship with these kids. Thankfully at least the parents understand! 

We had a very avoidant bed time routine last night, which also lead to a very late night as she refused to take her melatonin. 

Today Dinky is with her special needs group for a few hours, giving me a much needed rest after the non-stop action of yesterday. 

1st full day of school holidays and 2 theme parks!

Today was Dinky’s first full day of the summer holidays! 

Yesterday she had a half day- we went to a local park. Dinks wanted her special buggy from the car to the playground, so I put her in and pushed her over there. 

Before we had even got to the park people were pointing and I heard a very loud “that child is far to big to be pushed round”. I do try and ignore it, but surely they should realise that it isn’t exactly a win for me, or even for Dinky, she wouldn’t have gone to the park if we hadn’t taken the chair! 

I shrugged it off. I took some pictures of Dinks who was having a good time. Right up until some kid called her a boy and she couldn’t work out why they said that. They laughed at her for saying she was a girl. I wouldn’t mind if it was hard to tell, but dinks has beautiful long curly hair, and looks very feminine even in her light blue school t-shirt. I then over heard some parents calling my child odd for spinning while waiting for the slide and telling their kids to stay away.

By this point I had just had enough and so had Dinky, I got her back in her chair and some kids were calling her a baby while their parents just stood there on their phones. 

Today was a much better day! Although definitely more exhausting! 

Due to Dinky’s 11 months out of school we have seen all there is to see really at Legoland and Chessington. We have seen all the shows, the animals, and the mini Lego land, now Dinky just wants to go on rides. Which is easier said than done in Legoland with their 10 ride only for the ride access pass- if dinky would even stand/sit in her chair in a queue of strangers for a short time it would be a miracle! So once the tokens are gone- they are gone. She also gets rather fed up of waiting 30-45 minutes between rides at chessington.

So logically, as the parks are not too far apart along the M25, we have decided to do BOTH! 

As Legoland is always harder to find close parking, we decided to do there first. 

We got held up in traffic on the motorway so got there a while after opening, but it didn’t take dinky long to use her tokens! We did the submarine, the dino Safari, two goes on the big swinging boat, three goes on the dragon, one on the dragons apprentice and left at 1.30pm or there about.

We got to chessington at 2ish. Went on the vampire, dragons fury, kobra, dragon falls, scorpion express, then back to vampire- which we got stuck on due to a technical fault- dinky did really well, actually made everyone laugh because they asked if everyone was ok and dinks said 

No- I’m annoyed! 

And then when they said over the tannoy that he engineers were on sight and the staff member came to tell us that they were here she shouted

WE KNOW!

One of the staff members tried to have a little chat with her trying to be nice, but dinks wasn’t having any of it!

We bumped into a parent who noticed Dinky’s ‘auty not naughty’ top so we have her one of the key rings we picked up at the autism show.

We then went on bubble works, then back to dragons fury- which we got stuck on too for 10 minutes! Then one more go on the dragon falls. 

We had nothing but respect and courtesy shown by all the staff and other guests at the theme parks. No glares when dinky was spinning while waiting for her turn on the rides, or her rocking/swaying, or her humming and clicking noises. 

So I think I will be spending more time there than our local parks! We are also lucky to have 2 inclusive play buildings not too far away we we can make use of in the summer holidays!

T

 

The summer holidays approach…

Tomorrow at 1pm Dinky breaks up for the summer. 6.5 weeks at home. 

The transition leading up to holiday has been tricky. The school have been great, she has a visual calendar sent home, she has been crossing off the days as she takes her melatonin at night. However she is upset because one of the kids she is really fond of is moving up to KS3, but she is also happy that she is staying in the same class with her friend and they have the same teacher and most of the TA’s, one of her favourite TA’s is moving classes as they only have three students in her class in September, but have 1 teacher and 4 TA’s. The school printed off pictures of who will be in the class next year, so that is also on the wall of visuals. 

As for plans, we haven’t got a holiday booked in the traditional sense. We live close enough to London and a seaside that we can day trip it. That way Dinky still has her environment to come back to. 

I’m lucky as I have access to respite over the summer too. As much as I am looking forward to doing some of the things we did in the 11 months she was out of school, Dinky can be exhausting 1:1 for long periods of time, and her aversion to sleep doesn’t help matters. It isn’t that I don’t like spending time with her, with the breaks I get through respite, it gives me more energy to keep up the strategies needed to get through exciting trips without the high level meltdowns. 

I have made a monumental mistake, which will now be the norm, we will have to do both Chessington world of adventures and Legoland Windsor on our theme park days out. Although this sometimes might not be too bad as ride closures normally equal meltdown, but going to the other theme park might be enough of a distraction.

I will build in home days, as much as dinky loves to be active and doing things all the time, she can’t cope with it, so home days. 

I’m looking forward to the summer holidays, since dinky has been back in school it is like a part of me is missing. 

ITV ‘Girls with Autism’- the school didn’t quite understand PDA

There have been a number of TV shows recently which feature autism, and showing that autism has many faces and that as a spectrum, all people with autism are different despite sharing some unique characteristics. 

Last night there was a programme which highlighted Autism in girls, and the programme was focussed on three girls who go to the Limpsfield Grange school in Surrey. One of these girls has a diagnosis of PDA.

 Just like with many forms of autism, each person with PDA is different and the severity and how the condition affects them varies, as do the co-morbid conditions.

 It is also important to point out that I am looking at this through the eyes of a mum with a 7 year old, not a teen- who knows how dinky will develop. 

However what has to be said is that one staff member- Julie Taylor, did not seem to grasp the concept of PDA, the recommended strategies or the variations on levels of demands. Julie’s comments started with

with pathological demand avoidance what she really wants to do is be in a low demand, low stress environment, that would be sort of like a hospital bed where everyone was running around after her looking after her and doing that

firstly- NO! With pathological demand avoidance the choice isn’t all or nothing, the trick is to find one of 100 things inbetween to help reduce the anxiety and hope that it prompts the outcome you are looking for. Low demand can have many different looks, and low demand isn’t the same as no demand. It is a gross misrepresentation of what PDA is and how to approach it. It is completely the wrong attitude. The head teacher didn’t help matters with

She needs firm boundaries early on, absolutely consistent and non negotiable

This is absurd! There needs to be some non-negotiables, of course there does. her safety and other peoples safety be that staff or others needs to be number 1 priority. However, there needs to be flexibility and negotiable routes in order for a child to feel that they can comply. Actually to start with only pre determined non negotiables should be the rules, allowing the child to build trust and a relationship with the school is important if the placement is to be a success. This is obviously general, Beth may not have a severe manifestation of PDA which is why it wasn’t until 14 that mainstream became a major issue. She may be able to take on board a higher level of initial demands before additional demands take her over the edge. Whereas in my experience with Dinky she couldn’t cope with even learning in a play based environment but really couldn’t manage in an academic and therefore more demand filled environment of KS1, Beth at 14 would likely be in KS4. the PDA handling guidance from several professionals, but mostly based on the work of Sutherland house school and Phil Christie, suggests non negotiables, but absolutely advocates flexibility. and the head went on to say

she needs tough love and actually she is no different from anyone else

Well in a school of children with Aspergers and more classic autism presentations, having PDA does make her different, but it is the way they handle it (which probably shouldn’t include tough love), which will see her able to join in with the others.

It was quite upsetting to watch a distressed Beth try to avoid her PE lesson, she said she didn’t feel well, anxiety can manifest in stomach pains and in feeling unwell. So this should not be seen purely as an avoidance but also seen as a natural reaction for a young person with PDA when their anxiety sky rockets at the constant demands that is a PE lesson.

A teacher tried to say PE is like any other lesson, PE is nothing like maths, the demands of changing clothes into PE kit, and then being told how to do an activity, being coached on an activity which tends to include raised voices and direct language due to time constraints, physical safety, and generally being outdoors or in a large area and may not be heard if soft spoken and were long winded. Maths you go in, the rules of maths are the same, there might be a new way of doing things, but this is generally a discussion without having to proceed without listening to lenthy conversations about how the method is put into practice, or reading instructions and following them. So I am sorry teacher, but no, it is not the same thing.

Beth asked to be left alone, sometimes being given the chance to calm is all that may be needed, however she was then told that there is an expectation (which is another word for a demand of her) that that is what she needed to do. I hope by 14 Dinky would be able to still stay there instead of trying to escape or going into crisis. Then to be told she ‘doesn’t have a choice’ is just not a PDA friendly approach whatsoever! Praise was then mentioned, and praise has to be done carefully. Some children respond some don’t. Dinky likes praise for things she has done herself, but wouldn’t accept it for something she was forced or coerced into doing.

Again Julie Taylor comes in ‘with pathological demand avoidance’- which is a very general sweeping opening statement.

we have to put a very tight, ridged structure around that student, and she will not like it. and it is a bit like reining in a horse, and training a horse, in a way….it is almost like a wildness there that you have to capture and train

I’ve heard lots of stupid things but to give the opposite strategies to those suggested by the main professionals in PDA, and then it is like training an animal- this has to go high up on that list and quite frankly it is appalling! In all actuality, ‘with pda’, actually the majority of students would need some structure and routine, but it needs to be flexible and the more choice and ownership the child/young person has the more likely that the structure would be adhered to.

On watching this back I felt that Abi, who doesn’t have a diagnosis of PDA, was given a much more PDA friendly approach than Beth, who has a diagnosis of PDA. Which was astounding! 

We do not live far away from this school, but as things stand right now, I wouldn’t send Dinky there. I just feel that they are not unlike most other special schools I visited which tried to say they understood PDA and had students with PDA, but showed that they do not have a whole school knowledge of PDA, and It makes me question who led the training and what their qualifications in PDA are.

For Educational or general strategies for PDA you may wish to look at information from the people who know PDA best-

http://www.pdasociety.org.uk

on the website they have lots of resources including free downloadable leaflets/booklets/visuals, published papers, and links to published books on PDA. None of which would advocate this school’s approach to PDA.