This weekend I finally had news that has been a catalyst to move us on to the next chapter of our story.
But before I explain about that, I kind of need to take you back to what has happened so far along our journey, particularly as we have so many new followers that have joined the blog who may not fully appreciate the impact the news has had on our family.
My daughter is just eight years old but has never been able to make the leap to be in full time education. There are huge gaps in her history, from being excluded, to waiting for a placement, meaning that she has become very socially isolated and her mental health has suffered immensely.
She was just five years old when she was admitted via A & E the first time after displaying suicidal tendencies as well as becoming explosive/dangerous to siblings and family members (see here). It was clearly recognised that she was a very complex child with multiple needs, but sadly this was not addressed in her Educational Health Care Plan (EHCP) and school placements have failed as a result.
In total she has been moved four times and although she is still on roll at a local mainstream school (and despite their very best efforts) it was soon recognised that she needed something more specialist.
Earlier last year it reached a heightened climax and sadly the school realised that they would not be able to keep her safe or other peers/staff around her.
Multiple times followed when she absconded from the school grounds, eventually resulting in police being called and a traumatising incident when she was pursued by three units and restrained on the ground.
No parent wants that for their child. No school wants that to be happening to a pupil they care deeply about. Most importantly, no child wants to be in a place where they lose control and that could happen all over again.
So she started school refusing and instinctively I began to listen to her cries for help.
The last year has had many ups and downs, from the achievement of standing up at the Royal College of Psychiatry to talk about her PDA, to recently being admitted once again to hospital for a second time due to posing a high risk to herself.
As 2019 drew to a close she was placed on a Care, Education and Treatment Review (CETR) plan. For those who have not come across one of these before it stands for:
“CTR’s are for people with learning disabilities, autism or both who are in hospital because of a mental health problem or because their behaviour is seen as challenging to services.” NHS England
My daughter was severely at risk of being admitted as an inpatient to a children’s psychiatric ward and services were all brought together to see what could be done to prevent this from happening. The recommendations, although I don’t have them in writing as yet, are towards the need for an appropriate educational placement.
In the background an appeal had already been launched to the higher courts in order to push for a more appropriate setting for my daughter. Although it was recognised that a behavioural unit was not the right place for my girl, the local authority have ‘edited’ her EHCP in so much detail that it points towards her ‘fitting’ in such a place. Not only that, they also purposely ‘sabotaged’ the original school we had chosen, meaning our chance for a place was lost to another child.
The reality is that she has experienced a lot of trauma and that has been too much for her sensitive, autistic brain to process right now. In my opinion, she needs a calmer approach, one that is not driven by a ‘behaviourist’ punishment and reward scheme, and with a reduction in triggers so that she can maintain a chance at having an education.
There has been a huge battle along the way, with the tribunal dates shifting from November to January, to finally a hearing being given at the end of February. And with that hearing looming, and what feels like has been the eleventh hour, I received a phone call from the local authority.
To say that it has felt like a war battle can only be the biggest understatement.
I am still shocked that as a family we are still together and we are still standing.
So back to the phone call and the SEND manager stated that she was ringing with some good news – they were willing to fund the placement we had been given from the setting most suited to her needs.
Not only that, they also had already agreed transport would be accepted with the plan (the school is 40 miles away from our home) which means it was another battle I didn’t have to pursue.
For once I was actually left with no words.
I have been waiting so long for this and the excitement began to set in – it actually feels like we have won the lottery! We have a chance for my daughter to go to school where they may have the right environment to support her disability. For a long time, I didn’t think we would find a school, there have been so many that say ‘no.’ And with every knock it breaks my heart that little bit harder.
Yet in all that excitement is intertwined with fear and anxiety, how do we start again? How do we let new people into our lives? Will they like her? Will she finally manage and thrive in school?
I also feel tearful.
It will be unbelievably hard to say goodbye to the mainstream she is still on roll at. They have proven to be an important stepping stone on our pathway and I have no regrets that we started this placement.
They have shown us kindness and support, as well as a great deal of empathy when it was needed. Most of all they understood the communication behind the behaviour and liked my daughter regardless of what the external ‘face’ she was presenting them with.
We were accepted.
I said at the beginning they had restored my faith in the education system and that is still very much the case. They couldn’t change the system around them but they used a different approach and rectified the damage that was shown to us by previous school settings and senior management teams.*
There are no guarantees that this school will definitely be the answer but it seems that it is taking us on a forwards trajectory – a chance to try something different.
It’s not the beginning, it’s just the next chapter.
*To read more about our start at the last mainstream setting then here is an article published by the Special Needs Jungle.