Why the right school is so important to us

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.

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