At the moment it really feels like we are running out of options.
When I decided to have kids the only intuition I had was to follow the parenting style I had been shown by my parents (which had worked out pretty successfully for them when raising their own brood).
So when this style didn’t work I had to resort to finding a different solution – I had to find a Plan B so that our family could operate better.
It was around this time that I altered my focal lens and began adopting the strategies that were more suitable for families with PDA (a quick link can be found here to this information from the PDA Society).
I started to see my parenting role rather as a mentor; a positive guide and enabler to help and support my child so that she could find life that little bit easier.
We successfully established a more trusting relationship and we lost some of the battles we were having because I began to understand that her refusal really meant she was feeling unable to.
We were able to carry on for some time, a start in a new mainstream primary school also helped to give us something to focus on, plus the success this blog was having enabled us to meet a diverse range of people and get connected to others who understood.
Many talks and conferences were happening and we were up for two awards – this led to meeting our local MP in order to work on a campaign to get PDA better recognised.
Aspects of our story had been published in the local newspaper three times during the course of the year and we were on a high. It gave us so much to focus on and the positivity from this all helped to keep us afloat – it injected us with some strength to carry on.
However, Plan B only had a temporary shelf life – my daughter was never able to manage to come off of a restricted timetable, her behaviour was still unmanageable and despite school trying very hard she was still in continual fight or flight mode.
We all had to accept that we had given it a best chance and that the environment still wasn’t conducive to her learning needs; she needed something other than the more traditional school model that is available.
There comes a grieving process when your hopes of something working begin to disappear – especially when you have created great working relationships with the school. However, events catapulted this process, meaning that the decision to let go was taken away for us.
Her anxiety had rocketed and she was starting to abscond further – it is so tragic when this is the only option she has left to regain control of how she feels.
It wouldn’t matter how big those fences are, or the 2:1 ratio she requires to keep her safe, when she is in flight then she is gone. If stopped on her course she will attack and the devastation from this causes even more upset.
School were advised that it was their duty to call the police when she leaves the site – they had been following her from a safe distance but she was pushing the boundaries of where she would escape to.
We had the first warning and a unit was called as she had managed to slip out of sight, although she was found very quickly before the police arrived.
The second occasion we weren’t so lucky.
It resorted to three units responding to the emergency and a chase on foot pursued, until she was restrained by officers (very gently), until both school staff and myself arrived on the scene.
It all happened very quickly, but the ordeal has had an everlasting effect, and was just as upsetting for everyone involved. The next time she returned to school, her anxiety heightened and now with the fear of running instead she left a trail of destruction.
She has pretty much school refused ever since.
We have had a few visits together, but she has not been able to engage as soon as she feels the demand that I would be leaving the area – her trust has been disabled through her inability to manage feeling overstimulated from the environment.
School have even done two visits in the home and she was deliriously happy on each occasion – they would love to see her return.
Yet, the thought of going back is still too traumatising for her. She is scared of what will happen. She is petrified of her anxiety and losing control and most of all she is worried that all of the children will look at her and wonder where she has been.
So for many months (and a complete abandonment from our local authority) we have been left in no man’s land and without a plan to move forwards. A child who has been described as ‘in crisis’ and who shuts herself away at home yet the local authority are still putting obstacles in the way for why it’s not their responsibility.
Batted around services, made to tick every single box and still we are being failed. A place other parents find themselves in with the only option left available being to take our cases to tribunal – something the local authorities then pay huge sums out to fight against.
So now, we have to find a new solution – a Plan C so to speak. Only there doesn’t seem to be one available. Specialist schools in our county are all limited and we get told they are full, they also don’t have provision that caters for children with autism as their main presenting need.
We have places for moderate or severe learning difficulties (they are still a fight to get into) and the waiting lists are still huge. Consultations have been sent and our nearest school has stated why my daughter would not have her needs met as well that she would disrupt their cohort.
Also, there are units for students with social and emotional mental health, which focus on a behavioural approach to help support and educate; the direct opposite to what my autistic daughter with a PDA profile needs.
Our Plan C is looking to be an out of county placement, in an independent specialist school, with a 55 mile daily commute, but which is our only nearest option. Again, there are no guarantees that this will go ahead, but it is the only school that I can find that I believe could potentially meet her needs.
I think I may need a Plan D just in case – and that might just have to be an alternative package that won’t look like conventional education. However, with a recent change in laws, this can only be awarded with a plan to return to school.
We have to always think outside of the box, I’ll let you know when I have a Plan E, F or G in mind! Knowing my daughter, I’ll be reaching a Plan Z soon – with PDA I have become accustomed to always preparing other options!