When The Mainstream Runs Dry – Autism and Schools

Over four months ago I started a post that began charting the journey we’d had in choosing Joseph’s primary school. It wasn’t an easy post to write for two main reasons. The emotions that it brought to the surface about that starting point, almost six years ago but also because I knew where the completion of that journey would end.

Most posts, I can write within a few hours. The words drip feed into the computer whilst the emotion is still fresh,  hoping that the reader understands every ounce of sentiment that compelled me to write.

This, I just couldn’t finish. It was work in progress but writing it made me face up to my demons and still it sits in my drafts with only a few paragraphs sitting on an almost blank page.

Now, recent events have forced me to write what I barely want to think about let alone put down in words.

Joseph has always been educated in a mainstream primary and there are a couple of reasons for that. When I had to select my preferences along with other parents whose children were born in that year, Joseph didn’t have a document called a Statement of Special Educational Needs. For those that don’t frequent the world of Special Educational Needs (SEN), it’s a little like a passport. In the simplest terms, it explains to educational providers what the diagnosis of your child is and how your child would be best supported in school with a variety of services. It also includes the name of the school that is best placed to educate your child. This is in a perfect world, obviously.

Because Joseph had only just received his official autism diagnosis, that document had not been written. It takes a huge amount of red tape to complete and because we had moved from one local authority to another, it wasn’t as simple as it should be. Without this document, Joseph went into the same pot as everyone else and I had to see which school would not only accommodate someone with autism, but Joseph specifically.

I’ve made no secret of the fact that the school we chose for Joseph (and appealed for) was not the one he has been educated at. The school that was allocated to us, had a very good OFSTED report and upon visiting, the children all seemed well behaved and well, uniform. How would my child with all his little idiosyncrasies fit into this small village school, that not only looked Victorian from the outside but appeared Victorian in their approach?

Not very well as it transpired and we had a whole host of problems in those first few years, where it seemed that the people there were not used to children who didn’t fit the typical mould. We were almost on our way out and throwing in the towel when a new team started. A new team whose ideals fell in line with what I wanted for Joseph. An inclusive immersive environment where he thrived. One where I wasn’t asked to accompany him on every school trip despite him having a 1:1 support. Not one where they would take the whole class on a trip without any mention to myself, in the hope that I wouldn’t find out about it and use the words ‘risk assessment’ as an excuse for inexcusable actions.

I’m not going to view everything through rose-tinted glasses and tell you we’ve had a perfect ride, we haven’t. There’s been times where we could have communicated more effectively and times when I have wondered whether I should have given up on the mainstream idea long ago, because I felt Joseph was out of his depth. Throughout it all, I’ve managed to keep the faith in my own beliefs but more importantly the visions and values that the school have held.

As time has progressed, the ultimate goal of him reaching the end of his primary years in a mainstream setting have been within reach. Everything appears to have slotted into place and we’re settled. The realisation of what a mainstream secondary would be like for someone like Joseph has been harder to accept.

Coming to terms with knowing that a specialist school is the most appropriate education setting for Joseph has been a hard slog. When I think I’ve got my head around it, I have thoughts I want to push from my mind. I’ve feared such a decision as to me, specialist education feels like someone has taken my last bit of hope that Joseph can be independent and successful. My perception of a specialist provision was probably skewed from what such a school would have been like when I was growing up.

So over the last six months, I have researched almost every school in the local authority (and neighbouring ones) in order to ensure that Joseph receives the most appropriate education going forward. In the main, it’s been a draining process where I’ve visited schools and come away completely distraught. Schools that I could never envisage Joseph being a part of and schools that I have felt are letting children down very badly.

The process doesn’t end once I have selected a school as it’s all down to whether they have places and whether the panel within the Local Authority feel the place is suitable for your child. One step at a time though and my thoughts were to select the school first.

I’ll be honest, we’re down to the final couple of schools but I don’t feel either are a perfect fit for him. They are not autism specialist schools but they are the best out of the ones I have seen.

As is the case for children with additional needs, meetings at school should take place fairly regularly and we had one scheduled in to discuss the transfer of Joseph’s Statement of Special Educational Needs to that of an Educational Health Care Plan. Another hoop that the government expect you to jump through in order to secure the right support for your child.

The meeting started well and we were shown a video of Joseph with some narrative about the things he likes and his strengths. There was even some script from Joseph with music in the background playing. I’m not one to be so openly emotional but the video got me. I had tears rolling down my face, overjoyed at what lengths they had gone to showcase Joseph’s achievements and incredibly proud of this small voice being projected on the wall.

I suppose his Dad and I were still reeling from the video when the direction of the meeting totally passed us by. All of a sudden the conversation was centred around whilst Joseph had made good progress, the gap was widening between him and his cohort. The professionals involved with Joseph have continually focused on his emotional, social and communication needs and there is a balance to maintain in terms of supporting him with all of this whilst still trying to educate him in line with the curriculum.  There was concern that as his peers mature and move into the final year, Joseph would be left behind in all areas.

I’ve always believed in an inclusive environment but the reality is, other than his spellings, Joseph is nowhere near on the same level as his classmates. There is an increasing amount of time where he is being taught by his 1:1 which is not what I had in mind when I stood firm for a mainstream education.

To be frank, I was annoyed. Annoyed that not for the first time in this type of situation, I had been caught off guard (enemies please take note, the best way to catch me is completely off guard). I felt saddened that I had gone into a meeting not expecting to have this conversation when all of the school reports had shown so much praise and positivity about Joseph’s progress and development.

The tears absolutely flooded me. I was floored and I didn’t know how to come back from it. It was a difficult conversation all round and I was not the only one with tears, which made it so much more difficult to handle. The people around that table were trying to separate their personal and professional feelings for a boy that they had all grown to love and feel proud of and I respected that.

We were all there for a common goal and that was for Joseph and all wanted what was right for him. His Dad and I agreed that we would take on board what had been said and we would make the necessary enquiries to potentially bring forward Joseph’s transition to a new school.

I asked to take Joseph home with me at that point and he was brought to the meeting room. Joseph was incredibly embarrassed that we were all there and almost certainly wondering why we would all be there together, yet it was something he would never be able to comprehend. His teacher asked if he wanted to see the video and we all watched it again, much to the disgust of my tear ducts.

I don’t know how I got home that night. I felt like the carpet had been well and truly pulled from under my feet. I was sobbing all of the way home and Joseph kept trying to wipe my tears away which made me cry even more.

I messaged a couple of people to briefly say what had happened but I didn’t have the words to go any further with the conversation. When I’m at that point, I need to retreat and regroup and at the stage I wasn’t ready for opening up.

I broke my own rule of never running alone in the dark. I needed to run, needed to think. Needed to not have to think. Needed someone to take that large weight from my shoulders and make everything right. I didn’t think it was possible to cry and run but that night I learned that it was.

I came home and sobbed some more and couldn’t even talk about it. It seemed so ridiculous, given I had already resigned myself to the change of provision. All this meant was we needed to consider it sooner than we first anticipated. Whether it’s because the long term plan has now become a shorter term plan or whether it’s because I feel that in my mind the natural progression would be for Joseph to part ways at the end of Year 6, I don’t know. The irony in that I never wanted Joseph to go that school and now I can’t bear to say goodbye to it. I know I would find it hard in Year 6 to close the door on that chapter but everyone would be leaving then. I don’t want it any earlier, I just want things to continue as they are.

Each time an event is due to take place, Christmas party or nativity I wonder whether it will be the last one he has there and I feel a huge sadness in the pit of my stomach but try to push it to the back of my mind.

The school have made it very clear that Joseph will have a place there until we find the best option for him and will support us through the process. The only way I can describe this is if your partner was to tell you he didn’t think it was working anymore. He still cared for you but thinks you should move out. No rush but if something comes up then take it. You’re trying to hold onto those great times but you know that staying once those words have been said, makes it harder now the words are out in the open.

Maybe Joseph and I share some common traits and starting a new relationship with another school is the last thing either of us want. I don’t want to have to learn the new routines and for people to get to know both Joseph and I.

It took me 24 hours to be able to think clearly and focus. It took half a dozen telephone calls, countless emails and a committee meeting with myself to get back on track. Once the tears had subsided and I had taken practical action, I felt more in control of the situation. Nothing had changed, Joseph was still happy in his school and the people there still cared for him.

I am still coming to terms with the new route we need to take, but I’ve realised it’s not the end of the world. It may mean more work on my part and difficult conversations with Joseph when the time comes but we’ve come through worse.

I may have momentarily been lost but I will never lose the determination I need to be able to fight Joseph’s corner and be the best advocate he needs. The next step will be to ensure that Joseph secures a place at the right school for him and not just one that has spaces. When that happens we’ll make the necessary plans to ensure the transition takes place at a pace that is comfortable for him.

I know Joseph moving from mainstream to specialist is ultimately the right move for him and I know that by doing so doesn’t mean we have failed. Failing will be putting my own needs before Joseph’s.

And failure  – will simply never be an option.

9 Comments Add yours

  1. Annie says:

    Wow this has just made me sob! I also have a son in yr 5 mainstream with ASD and prospect of high school weighing heavily upon us. Wishing you all lots of luck with transition and hope you find the right school ( I’m still searching) . Continual bloody journey of swings and roundabouts x

    1. Sorry to make you sob! 😘I hope the right school finds us soon x

  2. Alison feist says:

    I read with tears. You have to remember you are brilliant parents and you fight to ensure that joseph has the best possible chances. Maybe going to a specialist school is the next course of action to ensure he is happy, we all remember children go through that awful age and would be unthinkable if Joseph suffered by them. Just think you are finding the right school for him, it is not a specialist school. It is so hard fighting social services all the time and draining. Keep going, have a good Christmas with paraglide. Like all children they present challenges but we sort and you have the amazing rewards. Stay strong you are doing an amazing job. Happy Christmas and 2018 full of health and love and fun. (Afraid challenges will still come).

    1. Thank you Alison. Happy Christmas to you too x

  3. Rowena Mellows says:

    Tina – I always read your blogs with interest and marvel at your persistence and organisational abilities, but this particular episode had me in tears.
    I feel for you all at this time and realise how many challenges are ahead. I know that you will continue to steer Joseph through all the obstacles that are ahead with determination and look forward to hearing about the trials and tribulations.
    Your ability to keep your reader involved is brilliant, please don’t stop no matter how difficult the times are. We are all with you in spirit and hope that things will work out this next year for you all.

    1. Bloody hell you’ll have me in tears! You kept me alive-it’s the least I can do! X

  4. Sending so much lover to you. I hope that the schools you have found will be perfect in every way. I know so many people come to us, feeling so sad that things haven’t worked out the way they would have liked. I hope very much that once they are there they feel it’s the best decision they ever made. Off to share this in my Facebook Group as I think lots of parents will relate to this xx

  5. Rachael says:

    I felt the same about my daughter going to a specialist school. Our local autism specific school couldn’t meet her needs and she now goes to a school where the children have a range of needs and conditions. After 3yrs of being in mainstream but completely isolated and 1yr on a very short timetable in education provisions and home, I’m not going to lie it was a hard slog. It’s taken until Feb for her to settle completely, and lots of communication between myself and the school, (and an amazing pair of lfs) but halfway through yr 5 she now looks forward to school! Is learning! Has made friends and is on an education plan and timetable specifically catered to her ( sensory breaks, allowance of supports etc) She tells me she doesn’t feel alone and it feels good to not be stared at on days when she is finding it more difficult to cope, she no longer gets into trouble if she has a meltdown ( we all have bad days and tomorrow’s another day) and is gradually needing her supports less and less. They have helped her to recognise when she needs to ask for help and taught her coping mechanisms which she can use independently. I can honestly say for the 1st time in a long long time I can see hope and feel confidence for the future. I was daunted at first, it was big and had secondary age children, lots of different need, but the staff listened to ME, and i have to say it’s a pleasure now picking her up, the feeling of dread has gone, I don’t feel judged by the parents at the gate because we’re all in the same boat or by the staff as they know it is NOT a parenting problem or me enabling bad behaviour, ie using her conditions as an excuse! school has always been the biggest issue for us, and it’s nice to start the day with a kiss and a wave than a 2hr battle. I hope this helps and sorry if ive rambled on! Good luck!! I hope your sons switch from mainstream makes your son as happy as my daughter’s did hers. Xx

    1. Oh thank you for this Rachael. So fantastic to hear such a positive story 😊😊😊 xx

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