So the first day of school has come and gone - and we are still at home waiting for a decision on where my Son should be schooled.

We have an appointment on Monday with an ARP (Additionally Resourced Provision) who is considering taking my Son - not sure what is due to happen or long it will take for a decision, but we hope that it will be sorted out next week.

For us finding the right school is about so much more than his education.

We have a diagnosis but no support

There has been a lot in the UK press (bbc news, daily mail), thanks to the National Autistic Society​, about the need to improve the time to diagnosis.  The NICE guidelines state that it should be 3 months from referral to diagnosis, however the majority of families report that they are waiting for 2 years with some even waiting for over 8 years!

We were lucky, we received a diagnosis within 8 months - largely due to the fact that we engaged multiple private professionals in addition to the NHS professionals we self-referred to. This allowed us to build a rounded view of our Son and his difficulties, which would not have been possible so quickly if we had just gone down the NHS route. This is due to the fact that they are under resourced - the waiting list for our pediatrician is over 4 months (as a priority case), the Speech & Language therapist is 6-9 weeks and the Occupational Therapist is around 4-6 weeks.

I hope that the increased focus on obtaining a diagnosis will also highlight the need for improved support once a diagnosis has been given. Not just for the child with Autism, but for the family as well. This is where we are struggling - we have a diagnosis but no support.

Our family are struggling without support

The year has taken a toll on us as a family as we have tried to keep up with everything that has been happening - understanding the different terms raised as we sought a diagnosis (Autism Spectrum Disorder, Sensory Processing Disorder, Pathological Demand Avoidance), attending multiple meetings with our Son's previous school & his eventual exclusion, figuring out the process for getting an EHCP, the various appointments and reports that were required to get the EHCP, and the weekly mission to chase people to help keep our case moving forward.

In addition we struggle on a daily basis as our Son's behaviour becomes increasingly difficult, and we don't know how to manage it. We have read about managing meltdowns and how to recognise & reduce anxiety for children with autism however this is a bit like baking a cake - you need more than a recipe to bake the perfect cake. You need to understand the different techniques, have sufficient knowledge of baking cakes to know how long to beat the mix for, how to avoid air bubbles and most importantly how to know when you have baked it for long enough.

Without school I am having to take indeterminate leave from work

With no school, I have had to take short-term leave from work to look after my son, with no clear idea of how long I need to be off for. I recently read that only 12% of mums whose children have special needs continue to work. Whilst I love my Son and would do anything for him, being able to work is something that is also important to me and not really something I want to have to give up. Without the right support, it is likely that this is a decision that we will be forced to make.

For us the right school is a lifeline

We keep hoping that if we can just get him into the right school, it would help us all. Finding the right school is about getting the right support - for us it is a lifeline.
ehcp without a school

We have an EHCP! Unfortunately we don't have a school.

As everyone excitedly gets ready for a new year at school, we find ourselves unsure of where to send our son as we wait for a decision to be made on the best place for him to go.

I can't believe that it is over 2 months since my son was asked to leave his previous school, and just one day until the new term starts. It is even harder to believe that we still have no uniform, bag, travel or childcare agreements for when we are at work and no confirmed plan for school!

So how is it that with just a day to go, we still have no plan for school?
Turns out it is a questioning of timing, waiting for the process to take its course, and being caught in the middle as a decision is made on whether our Son can go into an ARP (additionally resourced provision).

Granted an EHCP - which doesn't quite meet our needs

In the past month we were granted an EHCP with 30 hours of one-to-one support at our local mainstream school (a major milestone which I will write about another time).

This seems great until you realise that the support person would have no training or experience in dealing with ASD and defiant behaviour, there was no Speech  Language provisioning to address his acknowledged social communication problems, and the likelihood of our Son being able to manage in the school is extremely low (as highlighted by several professionals in the submitted evidence).

Agreeing that the provision needs to change

Luckily the county SEN officer we raised our concerns with agreed that he needed more specialist support than he could get in a mainstream school, however this would mean having to put in a request for a place at an ARP. This would then be reviewed at the next panel meeting, in October! She also advised we should apply for a place at a special school as an alternative option. Not ideal when you need a decision for the start of school at the beginning of September.

After much discussion, emails and phone calls we were able to get agreement from someone senior that our Son could go into an ARP. We need needed agreement from the nearest school with a suitable ARP. The school in question agreed in principle, however they would need to meet our Son and review his EHC plan before they make a final decision. Great again, until you hear that they are only available from the 2 September (the day before school) and won't be able to talk to you until then.

Wondering how to proceed whilst waiting for a decision

So here we are - a confirmed place at a mainstream school where my Son is unlikely to cope, and a decision in principle from an ARP which is dependent on an assessment which we know nothing about and may take anywhere from a few days to a few weeks/ months.

Neither school are able to talk to us today since they are all busy preparing for the start of term tomorrow, so the question we have to ask is WHAT DO WE DO?

Send him into the mainstream school who would need to arrange the one-to-one support knowing that he may have a place elsewhere quite soon, or keep him at home for even longer until we are able to talk to someone and get a decision on where he should go?
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