Following on from Charlie’s Autism journey last week for World Autism day, it is impossible to talk about the autism journey and diagnosis without sharing the school journey as this inevitably led to the autism diagnosis.

Up until Charlie started Reception, there was no indication that Charlie would struggle academically or in an educational environment. He met all his milestones other than speech, and other than communication issues which was easily interpreted by his caregivers, me, his dad and his childminder there was no reason to suggest Charlie would struggle with anything else. Charlie was with a childminder from 10 months old, childminders always worked with my other 2 children and it was a personal preference to have a childminder rather than a private day nursery. I must state at this time (or ever) I have never had family to support me while working and I worked full time before Charlie came along, and when returning back to work after maternity leave I returned to full time work. So childminders were always the preference given my shift patterns which have evolved and developed numerous times over the years.

When Charlie turned 3, I took him to the local nursery school which was attached to the infant school I wanted Charlie to attend. Both my older children had gone to this infant school, and my daughter had gone to the nursery, it was the obvious choice.

He was incredibly clingy when I left him at nursery and many times I had to stay with him the longest out of all the parents. It became apparent that on my one day off a week (Wednesday) I struggled to leave him, and he struggled to settle. He did manage to settle for his childminder however. On the sports day Charlie became extremely distressed when he saw me in the crowd watching him, he needed me there. I was the only parent to sit with the children for the morning. I dread to imagine what would of happened if I hadn’t of been there.

Charlie started school in September 2016. This was a local mainstream school that both my children had attended for many many years since 2010. Unfortunately, our local authority was in a pay dispute with the SEN teaching assistants and they were striking regularly. Knowing what I know now about autism, and routines it totally makes sense how unsettling these strikes were for Charlie. The school closed on all different days at all different times. There was no pattern to the closures it was completely random. His classroom was chaotic, there were several high level children in there, and Charlie really struggled with the noise. He was sitting under tables, or in the reading corner in total isolation not engaging in the lessons at all. However, in parents evening Charlie’s teacher said he was a dream and no trouble at all. But, his speech had regressed, his behaviour had become unmanageable and in four months he still couldn’t write his name. Even though he had written his name in nursery, academically he had not progressed at all. This was the first indication there was some SEN development issues, however, no mention at all about autism or attending the pathway.

It was Christmas 2016 that I decided to move Charlie to another local primary school. I was not happy with Charlie’s classroom environment and his behaviour at home was unmanageable. I was struggling to juggle everything and I thought that a move would make us all happier. He moved in February 2017. I had no idea that this move would begin the spiral of events that eventually lead us to the most distressing school journey to find the right school. Charlie struggled to settle in this new environment and there was extreme incidents which was very distressing. He was restrained, something that had never happened before and that he ended up having trauma from. He was excluded numerous times and he was isolated. By May half term the school had requested support from the local Pupil Referral Unit. It was the school that first suggested autism and a pathway, and by now we had a family support worker as the school had successfully filled out a Early Help Assessment.

But it wasn’t to be. In June, there was one final exclusion, he was 5 years old, still in reception. I was struggling at work. I had already dropped and changed my hours as much as possible in order to support Charlie the best way I could. He was permanently excluded and I took 4 weeks off sick, unfortunately days before my return to work I developed appendicitis and was rushed to hospital for emergency surgery. I was signed off for another 6 weeks due to complications in surgery because of previous abdominal surgeries. By this time Charlie had entered the PRU and he was attending just one hour a day. Life was unbelievably difficult. I had no support, we were totally unaware of Charlie’s struggles and I was told there was a 12 month waiting list to see the community paediatrician.

You can read more about the diagnosis journey in the diagnosis blog.

The PRU attempted to get Charlie into a programme called infair access, which meant he could attend another local mainstream school within the City. After the 12 weeks and myself viewing and researching a couple of schools I was not happy about this suggestion, it didn’t sit right with me and I wanted Charlie to have the most support possible as I didn’t want Charlie to become excluded again. I applied for an EHCP, with the help of the family support worker. Unfortunately, she left the family in December 2017 because of a change of job role. Because of all of the changes, I thought it unnecessary to have another family support worker and because the school had a family liaison officer I was happy to work with her instead.

It took 3 months to gather enough information to apply for the EHCP myself. It then became apparent that the life admin of a SEN child is so unbelievably different and heavier to that of a non SEN child. I had no idea. We were granted the EHCP in July 2018, and I had been looking for mainstream schools in our local area that could support Charlie. I did not even consider the SEN schools and to be honest, I was wrongly informed that it would go to panel and Charlie would not be accepted for special education. I saw many many schools and I only felt one would meet Charlie’s needs. The school decided that it needed more support and funding than the LA was offering to support Charlie so refused his placement. It went to panel. Panel overturned the decision and Charlie was awarded a place in November 2018. I was overjoyed, I loved the school and thought it was really inclusive and that Charlie would thrive here with the right support and the right EHCP. Little did I know, his EHCP had been very poorly assessed and written and did not reflect his needs at all. Because of lack of funding from the LA Charlie was unable to begin until January.

Unfortunately we never made it passed the transition stage. He never made it into a classroom, he was isolated from his peers, didn’t settle and the sensory processing difficulties that we now know he has made it impossible for him to ever fully integrate into a mainstream environment. There was so many issues including situations where he would abscond, attack and again be restrained. By April 2019 he was once again permanently excluded. He was 7 years old. Of course, he bounced back into the PRU.

Charlie remained at the PRU until March 2020 and then Covid 19 shut the schools. He never managed more than 3 hours in the PRU on average it was around 1.5 - 2 hours. Times where he stayed the full 3 hours were purely circumstantial as I had to visit schools that were an hour’s drive away, or attend workshops and training that were essential to knowing how to parent Charlie effectively. On these days, he didn’t cope, was restrained or put outside in the corridor. Some days, he spent the whole 3 hours in the corridor. It was a horrific time, but I didn’t have much choice. He couldn’t come with me, especially to the training, or to the school visits it just simply wasn’t appropriate. I was on my own, there was no help from the other parent at this stage who had moved on and was living as part of another family and was extremely unsupportive. I have no family and the LA was beyond useless. All in all I visited 17 schools in Derby City, Derbyshire, Nottinghamshire and Staffordshire. And rang countless more speaking to the SENCO in schools in Cheshire, Gr Manchester, Leicestershire, Rutland and South Yorkshire.

In February 2020 I called for an emergency EHCP review. After the permanent exclusion in 2019 the EHCP had sat in draft for 10 months. This is simply not good enough. The LA had agreed to SEN provision in July 2019. I called for a review and as a result the PRU agreed they were not meeting need. It was then I discovered the LA had fully expected to continue the remainder of his education at the PRU given the fact he had 2 permanent exclusions!! Charlie was only in Year 3. Luckily the school were fully behind me and supportive and knew it was not the right environment to educate Charlie.

During all this, I had been to visit a school in November 2019 and enquired whether or not they felt they could support Charlie. They thought yes, given his EHCP and his diagnosis. This school had been closed to us before as he hadn’t got a diagnosis, however, on getting the diagnosis in October 2019 this school was then available for us to enquire about. This is frustrating in itself, as if Charlie had been seen and diagnosed straight away, he would not have had the traumas and school exclusions he did and possibly could of been placed in this school up to 2 years earlier. Charlie was further assessed by the school and they offered a placement in February, I informed the LA.

When the finalised EHCP went to panel in March 2020 with my recommendation of school the LA named a special school 35 miles away because it was cheaper. I could not believe it. After everything, they were still trying to put costs before Charlie’s education. I immediately launched an appeal to take the decision to tribunal. Luckily Covid 19 happened, and Charlie never had to attend the school 35 miles away, which now is an absolute miracle as we know, he has struggled so much to transition into his current school. The LA’s suggestion was so inappropriate.

Three months into the appeal, the LA conceded with their school and decided that actually the school I had chosen for Charlie was far more appropriate. I can now confidently evidence this, and I will continue to vocally verbalise the struggles we have had. Charlie started his current school in September 2020 and it has been an incredibly slow transition, however, that is to be expected given the level of trauma. Although we got the school placement best met for Charlie’s needs, I didn’t give up the tribunal appeal. I actually continued, as the EHCP content was seriously lacking to support Charlie’s needs and we had no respite not a single second of it which is something that was put forward at appeal. The LA had to do a carer’s assessment and with that we were awarded 50 hours of community respite which was recently increased to 100 hours (we have a fantastic caseworker). Just 2 days before our court date in October 2020 we received notification that the LA had agreed to all of our recommendations in the EHCP and the respite care. What a result all those years of fighting and advocating for Charlie, he finally gets what he deserves.

If you have followed us for a while, you will know that it has been a long slow transition since September 2020 and Charlie only accessed full time, full days in school in February 2021. This is 4 years since the school refusals first started after his change of mainstream reception class and school, and 5 years since he started school, 5 years and 5 schools. The journey has been incredibly traumatic and at times I’ve wanted to give up. Everyone in our immediate family has suffered as a result and the ripple effect from this will haunt us for years.

For now though, the journey is complete. His school are experts at transitions and I’m hoping for smoothish transitions, through the years and through the classrooms. Luckily his school is up to aged 19 so fingers crossed this is the final school placement for Charlie lucky school number 5.

Well done if you managed to get to the end. It was quite a read.

Georgina x