When support isn’t supportive

Trying to get respite in this area is like trying to get blood from a stone.

All areas in England should have ‘short breaks’, it used to be called aiming higher, but it may also be called something else entirely.
Short breaks will be replaced by the ‘local offer’ under the children and families bill 2014 when it comes into effect in September, although the roll out may be (probably will be), a bit hit and miss to begin with.

For now, we have short breaks….

They are responsible for providing families with children with sen/disabilities a short break/respite.

We have quite a few providers in our county, Dinky’s SN group is one of them. They offer 2.5 hours a month, this takes the form of a small trip or play session with a 1:1 worker within the group for £5. In the school holidays this is 5 hours per week of the holidays for £12.50 and includes bigger trips out. Dinky went to the local farm (which is an attraction and not cheap) last week and loved it. Dinky always comes back a little more avoidant, but happy. And I feel like I have actually had a break.

I had dinky on the waiting list for many more, on the advice of one of the providers as they are completely over subscribed.

I was lucky enough to get a fortnightly 1:1 for 4 hours. This was much more expensive at £10 for the 4 hours plus the activity and mileage.
For example, she took dinky to the tree top adventure as she offered without consulting me and the cost involved.
It cost
£10 for the 1:1,
£18 for the admission (and that was only because I managed to get them to do the carer free),
£3 in mileage,
£3 parking, and
£5 because it was only an hour and they went to see the animals and dinky wanted a tiger toy.
So 4 hours respite cost a grand total of £39. Dinky came back rather flustered but ok.

It is not so much the cost but I do refuse to pay this amount for a service after the cinema trip 2 weeks ago.
There was an autism friendly screening of Rio 2 at all cineworld cinemas across England. Dinky really wanted to go see it. The reason the autism friendly screenings are so good, is that she can get up move around, talk and basically ignore the demands placed on her at the normal screenings. So I felt that this would be a good activity.
When 1pm came, and dinky came home- well, I was completely unprepared. The stress and the despondent look and actions of the 1:1 worker were only a fraction of the shock of Dinky being completely stressed out and non-verbal, grunting and making noises.
The 1:1 worker said that Dinky had been difficult and grumpy, with that Dinky pushed past me and went to her room with her iPad, and I asked what happened. The 1:1 worker had said they were early for the cinema so they went into a restaurant, and she had a coffee and breakfast. Dinky had said she didn’t like the smell of the place. Then, they went to the cinema, and dinky was swinging on the bar (as she does), and the worker told her that she can’t do that with her. The worker seemed very annoyed and I left it.

Dinky was not happy, I had to leave her for an hour before I could even talk to her and then it took me a further couple of hours to calm her down and for her to actually talk to me. She didn’t say anything about the cinema, but said she didn’t want to go with the 1:1 again.

For the past 2 weeks I have been wondering if it is worth it?
It could have just been a one off, but equally, it may be that she just doesn’t get Dinky. She has an autistic son, but the strategies are different, she has read my understanding PDA book by Phil Christie et al, and she has a very detailed support plan which describes the type of interaction that is appropriate for Dinky and how to help her.
She obviously didn’t use ANY of it when out.
Even the next day we were having post school-like mini meltdowns over small things.

Was it worth the break? Nope. Would I pay £25 for her to come back in that state again? .. No.
I refuse to pay for support hat isn’t supportive.
While I can understand the whispers of ‘she keeps turning down support and then moans that she gets no support’, what they fail to realise is that I am not just going to stick dinky with just anybody, to get a few hours rest without her, only to have to deal with the fall out. It is not right for DINKY. Respite isn’t just for me, it is for her too, she deserves people who make a real effort to understand her and treat her with the respect she deserves. Dinky has NEVER come back from the SN group in that state! She has had meltdowns, sure, and been really avoidant, but she had a good time.
So yes, I refuse to keep support that isn’t supportive!

Which brings me to my dad.

Bless him, he does now at least TRY to help, he just doesn’t get it. I have drip fed him with information, he is FINALLY accepting of PDA. However I still have to referee and if I do go do my shopping, or go to an evening autism support meeting, then I generally come back to Dinky in a huff and my dad in a mood and find that there has been a lot of shouting and arguing in my absence.
I have lost count of the amount of time I have had to say “ENOUGH” to the pair of them and say to my dad “what part of PATHOLOGICAL DEMAND AVOIDANCE do you NOT understand?”

So most of the time, it is just easier to look after dinky alone, as I actually understand her.

Support is only actually support if it is supportive!

Being the parent of a child with PDA is lonely at times and for the most part pretty full on, but it is the only way to do what is right for them.


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