#10 Anxiety, Preparation, Vindication and Fizzy Wine.

This will be the last of the numbered posts, as this will conclude the story of how we got our Autism diagnosis. From here on out, I'll be going back over some of the topics I've touched on previously in more detail, and hopefully, with more useful information too, plus lots of other subjects I haven't mentioned yet.

For now, though, let's talk about Social Communication Assessments. More specifically, Noah's.

When the letter arrived inviting us to the appointment, I was initially filled with dread. I felt like this was going to be like applying for the EHCP all over again, except this time in person, with experts judging our parenting skills and generally making me feel like a complete and utter failure.

So, in my anxiety, I reached out.

I'd joined a Facebook group sometime before, set up by a fantastic SEN parent who had felt completely alone and unsupported during the lockdown. It was for parents of other SEN children to support one another. It was a great resource and an incredible eye-opener for just how many of us are out there, desperate for some kind of community.

I posted asking other parents what I might expect from the assessment and how best to prepare. The response was brilliant. Straight away messages started to come back about other peoples experiences, the kinds of questions they'd been asked and how their children had behaved. It helped me prepare myself mentally, and I appreciated every single one.

I arranged time out of preschool for Noah, and off we went. I gave Noah some room to explore while we waited to go in, and I sat mentally preparing myself.

"Noah is NOT made up of all the things he can't do, he's made of all the wonderful things he does do." - I repeated to myself over and over. I wasn't going to let this upset me. The result didn't change anything, by now we already knew what they were going to say, this was just another tick box on another sheet.

The Paediatrician came and found us in the waiting room, and escorted us to a little room where he weighed Noah and checked his height. It was at this point that Noah decided to dart off down the hallway. Off to a great start! I ran off after him, listening to the Paediatrician giggling behind me. Eventually, we were led into another larger room where a Speech therapist and OT were waiting for us.

The room was littered with toys for Noah to play with. "Look Noah!" I signed the Makaton for 'look'. The Speech therapist picked up on the fact we were using Makaton straight away and praised me for my efforts, which naturally made me awkward! They then explained that whilst the paediatrician asked me lots of lots questions, the Speech therapist would get down on the floor and play with Noah, seeing how he interacted, and the OT would observe his physical behaviours. After that, the Paediatrician would examine Noah, and then, they would leave the room to discuss their findings and come back with either a diagnosis or a recommendation for more testing. I was not to intervene and help Noah be understood, they needed to see a completely natural example of his behaviour. The whole thing should take no more than an hour.

Great. I braced myself for the questions. "Can Noah talk?" -no. "Does Noah interact?" - no. Those questions didn't come. Instead, I was surprised to find out, the entire interview was about HOW he did various things, and at what age he started to do them. It was a positive perspective that I hadn't been prepared for. It made me feel so comfortable that soon the details were flowing. Noah was typically himself, running around the room running his fingertips over different surfaces, giggling, climbing, laying down on the floor, tugging his shoes and socks off and ignoring all of the toys and most of the Speech therapists attempts to engage him. He introduced himself the only way he knows how by sneaking up to the OT and pressing his lips to the man's arm and at one point climbed into the Paediatrician's lap for a closer look at his face. He was so wonderfully himself that I couldn't help but smile. They needed to see Noah in his truest form and they were certainly getting it. Occasionally the OT interjected with a couple of questions, and I got a chance to explain some of the things I'd been trying with Noah and how effective they'd been. Lastly, the Paediatrician measured Noah's head and check all his joints for flexibility.

After a while, they took themselves off next door (behind some one-way glass where they would be able to watch how Noah interacted with me whilst we were alone) to discuss. It didn't take them long to come to a decision, and within 5 minutes they were back and sharing their diagnosis: Autism, Sensory Processing Disorder, and Language and Communication Needs. Exactly as expected.

They offered me some handouts on where I could find more information on support groups, some great websites where I could learn more about Autism, and what happens next regarding his diagnosis. We thanked them and left, and as I got Noah strapped into the car I burst into tears.

It wasn't because I was sad, but because ever since I first spoke to the health visitor about my concerns, I had felt like I was being pushed from pillar to post. It had been one department after another, telling me to "just give it another three months", or endless waiting lists for therapy. Finally, FINALLY I felt heard. It was like vindication! I wasn't just some over-anxious first-time mum. I felt seen, and I felt like I'd reached the end of the longest day of my life and just sank into a comfy sofa with the biggest sigh. It was pure relief. We'd done it!

I'd developed this mental checklist over time.

Get Speech therapy - Check

Get an EHCP - Check

Get Disability Living Allowance - Check

Get a SEN school placement - Almost check (It's chosen, we're now 9 days from the decision)

Get an ASD assessment and hopefully a diagnosis - CHECK.

I'd done it all... there was nothing left to check off and nothing more I could do. All I needed to do now was sit back and enjoy my little boy for exactly who he is.

I drove us home and carried on with our usual evening routine, and that night once Noah was in bed, we popped open a bottle of fizzy wine and just took a minute to process the result.

I shared our news with family and friends, and one friend in particular eventually convinced me to write our experience down. We'd been through so much over so long. I felt like I'd been studying for a test that I was never going to sit, and I needed to get all this information out of my head. Maybe someone else would find it useful... and so the blog was born.

So now you're up to date with Noah's story. I still have lots to share, and a lot of topics I haven't covered that people might feel useful, so watch this space.

If you've made it this far, thank you, and if you're a parent going through the same thing and you're struggling, or you're unsure, PLEASE reach out. I will always respond to anyone who needs to vent or just wants to ask a question. They say it takes a village to raise a child, and that's true, but sometimes the parent needs that village too.