Our Diagnosis Journey

Assessment day came and went and feedback day came by in a blur of mixed emotions, nervous, intrigued, happiness to finally be seeing a Doctor who I’ve heard lovely things about, and scared of what was coming next.

Since the age of around 3 if not before it became apparent to me that things weren’t quite right with my son H. He had seizures from 4 months old and a diagnosis of epilepsy and medication from age 2 but seizures we became a pro at. Managed to cope on not much sleep with our amazing family always being a support to us. Also, because they are a physical thing that doctors can see you get believed but violent behaviour, obsessiveness and having to stick to routines are so much harder to prove.

Over the years we have had so many people just assume that H is Autistic. I had a doctor whilst we were away on holiday having a particularly challenging time with H in Centre parcs ask me ‘when was he diagnosed?’ I said ‘with what…. Epilepsy do you mean?’ knowing full well what he was referring to that my gorgeous little guy with bright blue eyes was screaming the place down due to sensory overload and only calmed down once I sat on the floor in the middle of the place with him rolling a ball to each other over and over again for what felt like forever. He then went on to ask if he was diagnosed with anything else which I replied, ‘no but I know what you’re thinking and I also think the same.’ He was the first professional out of a big long list we were to meet on our Diagnosis journey to ask if H was Autistic before a diagnosis.

Those times seem so long away now when I have a big 5ft6 grown up 11-year-old next to me tapping me on the head saying, ‘hiya down there mini’ We have been through 2 nurseries, 2 schools and then went on to Home educate as nobody seemed to be able to help us in the way we needed without a diagnosis.

We saw a boy so stressed out and sick every day whilst going to school and the meltdowns after were horrific. He was losing weight and my amazing little boy was just fading away his anxiety so high and his mental health deteriorating day by day. I decided there had to be more to life than this for him and myself and our family so I de-registered him that day not really knowing what I was doing but it couldn’t carry on how it was going as he was getting bigger and more violent.

Since then life has changed a lot for us we manage a couple of groups now and I’m always trying to find new ones that he will give a go. We also got to meet a lovely lady in CAMHS who was quite shocked that H wasn’t diagnosed but she was brilliant at actually getting Harvey talking using pokemon of course but it was brilliant to see a professional finally see what we saw his amazingly funny quirky ways and she helped us trying to come up with a few strategies and filling out paperwork and fighting with waiting lists to get an ADOS Assessment done for us but then as our luck goes her contract finished and it felt like we were back to square one, only to finally get a cancellation appointment.

Appointment day came and I think I was more nervous than H even though he was pretty stressed out it felt like this was our last chance of getting him the help we knew he needed. I was lucky to have my amazing partner keeping me sane. But H had a ball thought it was hilarious. I on the other hand found some of the questions really hard in the other room with the computer and 100’s of questions but I managed it.

The feedback session I found really interesting and they said kids don’t usually end up seeing them in the CAMHS assessment service that score so high on the ADOS as education settings should pick this up already. So, we got it the ASD diagnosis we had known he needed since he was 3 to get support. People ask me now how do I feel? relieved? The answer is NO I feel so angry that it has taken so many years of fighting, stress and really feeling alone at times when an hour’s test with the right people ticked the boxes that needed to be ticked could have got him support years ago.

But its done now and now he may be getting an ADHD diagnosis too after all the waiting for one diagnosis he’s now getting 2 as well as generalised Anxiety also. But he walked in there as H and walked out the same kid still amazingly quirky and fun to be around and completely awesome. So if you’re a mum and you just know….. keep fighting….. please keep fighting.

AdhdAutismMulti-sensory worldThe national autistic society

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