Its been a while since I last wrote, and thought I would write about our Journey and experiences with School, Home education what I have learnt during this very complex maize of a minefield, in trying to gain the ever elusive gold piece of paper, the Educational Health Care Plan (EHCP).
There seems to be sadly a lot of parents facing a very similar situation whom also like me didn’t know which way to turn, where to go for advice, what was true, and relied heavily upon support groups for a place to gain some experiences, also a much needed shoulder to cry on. The whole process of trying to get a diagnosis, support in school and out , home educating and trying to obtain an EHCP was and is probably one of the most stressful aspects of this whole Special needs journey for me and probably many others. It seems Inclusion in school really in my mind means exclusion, and I will explain more why I support that statement as I go along.
There seems to be an abundance of children with additional needs in school whom for some reason don’t get the support they need. Mainly children with Autism Spectrum conditions seem to be the ones suffering the most. This could be for numerous reasons. For the most part it might be because there is no diagnosis yet. Its been well documented now how many children with Autism can often mask their anxiety and go as passive as possible to get through the day. I’ve spoken about this before in previous Blogs. The other reasons are that in a class of 30 often our childrens issues go unnoticed, yet to the parent its very obvious something is making them blow when they get home. If you have tried to get the school to listen and it seems to fall on deaf ears, I know the feeling to well. I would at this point before anything else breaks down contact a legal SEN advocacy team whom can try to be a point of contact between you and the school. Sadly I learnt this too late. I have also heard numerous stories of children without a diagnosis or even with that are being illegally excluded from school because the school cannot cope, yet in the same breath they don’t feel that gaining an EHCP plan is likely too. Make sure you read up on your rights about exclusion, mainly where there is a disability they cannot exclude. Anyway back to our journey that took us into De-registering our child and embarking on home educating. Before we left the school we sought a private diagnosis by some very well respected consultants in their field. I presented these reports to the school whom point blank refused to take them on board. At this point we had reached a stale mate, the school were not prepared to take on board our sons diagnosis of Autism, therefore would receive no support in which he so desperately needed. I have since learned that the school should not of disregarded the Private reports so readily, that in a case of Tribunals and used by the Local Authority that they hold much weight, however a lot of schools do this, even some Local Authorities and NHS consultants wont accept them, which is very wrong and worryingly classed as discrimination. When I talk loosely about the word “alot” of schools I mean the ones that really in my mind shouldn’t need the papers to act. There are some schools that work hard with the parents without a diagnosis and these schools should be celebrated, they go above and beyond a needed piece of paper. However there are many schools who wont, there closed minds and ability to avoid helping means that so many children are being failed. It seems money is the key point of all of this sadly.
We did however push our NHS consultants (forced practically!) to carry out the appropriate assessments after being in the system for 3 years at this point, it was one of the reasons for going private to help speed up the process and get school on board, boy, how wrong was I?!, However the assessments via the NHS revealed the same diagnosis, Go figure! To be referred for assessments for Autism Spectrum Conditions you can visit your Gp, that would be the first point of contact. You do not need the school to do this, you do not need the schools acceptance neither the Local Authorities to go to your GP . I have heard that in some parts of the country that the GP will not refer for assessments, only the school can refer. Not only is this terribly wrong, but what about the children not of school age or are home educated?
Autism is a medical/ Neurological disorder that warrants a referral like any other medical issue, to be denied the appropriate assessment via the GP is wrong. Once you have visited the GP and managed to get a referral its a very long wait. You might of seen the headlines about waiting times for Autism diagnoses around the country. It is shockingly bad.
Our next part of the journey, almost 2 years later and home educating, took us to a point where my son waned to try to go back to school. This made me really scared, mainstream had failed him terribly, there was no way I would send him back to mainstream and there are many reasons for this.
When Mainstream wants to be Inclusive, it really does not make it Inclusive. A child with Autism who struggles so much in daily life , whom are quite often targets, made to feel different, given little or no support and try hard to blend, feel totally hopeless! This isn’t inclusion, this is all about money. I am being blunt but truthful. It costs far more to get into a specialist Autism school with specially trained teachers, TA,S, Lunchtime supervisors, and quite rightly so, they are worth the investment. Some people feel mainstream is best for their child and that’s totally a personal decision, but I fear most children would thrive in an environment with people who get it. Who wouldn’t? I dont want my child having to conform to what mainstream thinks he should have to do, even before he tries to learn! I want a place that celebrates him and helps nurture, and bring out the best in him. To get into a specialist school though you need that Golden Ticket! The EHCP. Infact to get your child help in education at all with Autism it seems you have to fight, blood sweat and tears and then some more. Getting the Golden ticket to put it so delicately is a, frigging nightmare! Then getting it right is a frigging nightmare! You do not need a school to get an EHCP, you can apply directly to your Local Authority SEN team. They have their own team that will embark on assessments if you are lucky enough to get that far. I would Highly recommend a SEN Advocacy team to help you, it will possibly be the best investment you make. Funnily enough the LA are using some of our private reports, so they do hold. Even if I manage to get all of this, there is no guaranteeing all be fine and dandy, but I have to try.
Anyway I’ve rambled a hell ova lot in this, and we are still in the process of getting the EHCP just right, and finding the right placement. We go to panel soon and until then I hold my breath, drink wine and look to my wonderful boy for inspiration daily. He is the reason I fight like this and is the reason why I will continue to.