What we've been up to...

Wow, three months have passed since I last wrote on my blog. 3 children + 2 jobs = life flying by very quickly.

About 4 weeks ago our life kinda turned on its head too so I've been preoccupied with trying to get my head around it all.

As long-time readers will know we've had a lot of problems with Charlie over the years and despite assessments and constant requests for referrals (which have been turned down, mostly for ridiculous reasons) it was just put down to 'rigid behaviour'. We tried everything that was suggested to us bu the few people that offered short-term help but nothing changed and his issues are becoming far worse. We've argued for referrals time and time again but because none of his behaviours are outwardly displayed at school there was no back up-as if we, his parents, would lie about what goes on. I was adamant, after research and talking to others that he is displaying autistic traits, particularly high functioning (HFA), passive demand avoidance (PDA) and oppositional defiance disorder (ODD).

It all came to a head a few months ago after some really horrible times and I demanded a referral to CAMHS. Charlie and I attended a lengthy assessment in May and thankfully a mental health issue was ruled out but the assessor said that he could see a lot of autistic traits and even picked up on some in the referral letter from the GP-who had spent no more than 10 minutes talking to Charlie at the appointment. The assessor mentioned HFA without me saying anything and it was like a HUGE weight had been lifted off my shoulder. FINALLY someone believed me!

We've now sent off another referral, with the backing of CAMHS, and await a decision. Waiting lists are 18 months and he starts high school in September so it's a long haul before we get anywhere, IF we get anywhere. I feel bad for not pushing for this sooner but I believed the SENCO at school when she said that we had no chance of an assessment for ASD because it needed to be displayed in two settings. Fingers, and everything else, crossed that they'll take into account CAMHS's opinion. In the meantime I am soaking up every bit of information about HFA that I can and researching new (to us) techniques and strategies. We've got a long way to go but I've already gained much more of an insight into my son and he has been a bit calmer since the appointment. He wants to understand himself, his reactions and view of the world as much as we need to.

Two days later I attended Harry's Learning Review with his class teacher. Concentration has long been an issue for him but after attending an SRB unit for two terms in 2016 for his Speech & Language delay he seemed to settle down a bit so I was quite shocked to hear how much he is struggling in his current class. He regularly wanders around the classroom, has little to no focus and his mind wanders all the time. The teacher asked if he'd ever been assessed for ADHD. You could've knocked me down with a feather. Suddenly so much made sense. I looked after a child with ADHD during 1:1 lunch sessions a few years ago and so many of that little boy's quirks and behaviours reminded me of Harry but I thought nothing of it at the time. I came home and looked up a few assessment questionnaires for ADHD and he ticked so many boxes. I appreciate they are guidance tools rather than a diagnosis but they described Harry to a T.

So, on top of dealing with Charlie's referral we've had to compile a lot of evidence for Harry's referral. It has been a lot easier because school back us up 100% but it's still been a shock realising how much we've normalised Harry's behaviour over the last 8 years because we've been tied up so much with Charlie. There's a lot of guilt involved.

It's very early days but I am already exhausted. Inbetween the usual busy day to day stuff I've been regularly chasing up SENCO at two schools, trying to make sure high school are prepared for Charlie, trying to remember new techniques for both boys, trying to make sure everyone is happy, getting other people to understand our issues (that's my husband I'm looking right at!), fighting to make sure my boys can reach their full potential....and so on. It's definitely a steep learning curve for me.

After filling in Charlie's ASD questionnaires I thought I'd fill one in for myself as I recognised a few behaviours......I scored higher than he did and I'm right in the middle of the ' indicates a strong likelihood of Asperger syndrome or Autism' category......!!