Paddy McGuinness said it best a couple of months back when he appeared on Loose Women. He said, "If you've met one child with Autism, you've met ONE child with Autism because every child is so different." and I couldn't agree more.
The first (and consequently only) time we met the Occupational Therapist assigned to Noah in person was a really unpleasant experience for both Noah, and myself.
I'm sure she's great at her job, I'm sure it could easily have been a bad day, but the woman we met was disinterested, disengaged, and completely unhelpful.
Noah read her immediately and wanted to escape the assessment room from the second we arrived, and he is never like that. He's the most laid back child, and even if he's not interested in the people around him, he'll still happily do his own little thing among them but not this time.
I lost count of the number of times I had to bring him back from the door of the room because he kept indicating he wanted to leave. Eventually, he thought I wasn't understanding him and got so frustrated that he was crying his little heart out. It was awful. The OT remained uninterested throughout. I had already had a lengthy video call with this woman where I had explained how Noah doesn't show interest in toys and games, and that he prefers things that stimulate his senses instead. Knowing this, she still brought along a selection of toys that Noah had no interest in. "Look at my dinosaurs," she said to Noah, whilst he tried to climb back inside my body away from her. I felt like she had completely ignored me.
I decided to try explaining about Noah again, and I mentioned that we were considering if he may be Autistic. Without hesitation she just looked at him and said "Yep, he probably is." Wow - I thought, what wonderful people skills she has for dealing with anxious parents.
Once the idea of autism had been put forward it was as if she stopped seeing the child in front of her and instead just saw this walking talking diagnosis (which we hadn't even had). She began to suggest things like ear defenders and weighted jackets for whenever Noah had a meltdown. "I carry one in the boot of my car for MY Autistic daughter" she said proudly. I explained that Noah (luckily) doesn't really have anything close to a meltdown - he has tantrums and got frustrated but nothing more than any other child of the same age would. "I would still get one" she said.
She wasn't hearing me at all. She told me I needed to put a weighted jacket on Noah for half an hour before leaving the house and to carry it with me to prepare him so he didn't meltdown. I couldn't make her understand that I can take Noah anywhere and he isn't phased. It was as if she had a box of tricks for Autistic kids with a one size fits all attitude. I don't understand how someone can work in the system and still be so clueless.
I left that appointment feeling completely flat and hopeless. I remember taking Noah round B&M's to look at their sensory toys afterwards, because I just wanted to replace the whole experience with a positive for him.
You'll probably notice that my tone in this one is less than positive, and far from complimentary, but in truth this was the first time I felt like Noah was being completely written off by someone who's job it was to encourage inclusion. I remember when our EHCP reports came back, reading through them, hers was the only one that I didn't recognise Noah in at all. Like she hadn't looked at him.
I wish I'd spoken up a little bit more at the time, that I'd questioned her approach. Back then it was all new, and I'd been treating every appointment as a tick box exercise to get the EHCP, because all of it was uncomfortable and we were just getting through it. Even now we're at the end of that part of the process, she still remains the only person to have made me feel that way, and I've since learned that, if you're not happy with a certain therapists assessment of your child, or attitude towards them, you can ask to be assigned to a different therapist for future appointments, no questions asked. If you ever feel like an assessor isn't a good fit for your child, speak up.
What Noah enjoyed most about that day was sitting in the B&M trolley, giggling and leaning backwards to look at the big lights on the ceiling, that's what I try and remember whenever I think about that assessment.
Here's your affirmation;
Never be afraid to speak up, because you are the best person to advocate for your child. Only you know what they're like 24/7, so don't let any one, professional or otherwise tell you any different. You're doing great.
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