Wednesday, 28 October 2015

EHCP madness

We waited 8 long months for the boys to be assessed. Anyone who knows anything about children with special needs knows that early intervention is key so this waiting was just torturous. We were of course still having speech and language and occupational therapy sessions but with no effect. The boys couldn't understand a lot of what we were saying, couldn't talk properly, were still terrified of most food, were crazily anxious with people other than Matthew and I and just couldn't or wouldn't do things that most kids their age should be doing.

When the appointment finally came, I knew in my heart that we were going to hear the words we dreaded most. "Your sons are autistic". I did my best to show them off in the assessment - Look they know their colours! They can recognise numbers up to 10! They're so affectionate and loving, they're just scared, they sleep really they don't eat most foods but hey, who needs food? Are you sure they're autistic??? Unfortunately the answer was a great big YES.

You think that once your child gets a diagnosis, you get given the therapy they need and you crack on. Wrong. You don't get given anything - you have to fight for it and even then it's minimal. I spent hours and hours researching everything I could find on autism as S&L and OT was just doing nothing for the boys. Seeing a therapist once every 3 weeks just wasn't enough and their approach wasn't working so I had to find a way to help them. Every second I had, I was reading and talking to other mums.

All of this was done whilst applying for their EHCP - the document you need to get them 1:1 help in nursery and school. The most important document they will ever have. If you do it incorrectly you end up with less support for your children or none at all. No way I was about to let that happen!

These forms were possibly even more heart wrenching than the diagnosis itself. There is a breakdown of each element of your childs needs. I had to write the form as some of the therapists who were meant to write it had omitted so much, got details wrong, their names mixed up and not done it correctly. Some parents attend workshops to learn how to do this but with the help of other mums and staying up until 1am for weeks I managed to do it. I had to go over each and everyone of their issues - there are many so this took a long long time and as you can imagine it was incredibly upsetting. I would close my eyes at the end of the night and all I could think of was "delayed development, autistic traits, sensory issues, behind, not reaching milestones" . I couldn't sleep just having to go over all their issues - my heart broke with every one of those sentences. I finally finished Joeys and as the boys have similar issues I thought I would copy and paste the form for Xander but I was then told I had to make it as different as possible to make sure they got a separate 1:1 assistant. Another few weeks of mental torture as I tore my other son apart!

I then led the meeting and we all agreed that the boys would have 1:1 so it was a huge shock that when we were on holiday we got the news that they wouldn't in fact be having 1:1 help. WHAT??! After a few frantic phone calls and more fighting on my part (and an amazing nursery head teacher and supportive case worker) we finally heard that we had got what we wanted. Help for the boys with 1:1's at last.

They start nursery in September and although I am dreading leaving them for the first time on their own, I know they're in good hands. it won't be the first time I've been in tears in public because of my monkeys but the thought of leaving them unable to communicate properly, not knowing their carers and seeing their little faces watching me leave just leaves me shuddering! I AM a brave mumma - I CAN do this....can't i?!

Now that the nursery is all sorted, we have started the enormous mission to start the boys on a diet which is designed especially for ASD. It's called the GAPS diet and it's insane. Insane but known to do amazing things for little one's like mine. It's totally hardcore but if there's a 1% chance that it will help the boys then my God we're on it!

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