Just like the last part of the Great Ormond Street story, I didn’t know how to start writing this blog. So yet again I’m following the words in my heart and not my head to try and tell you all how the kiddo’s sensory assessment went. Here we go…
I now know that I was not prepared for this assessment in the slightest. I was incredibly naive. I just thought it would be like when the Occupational Therapist from Virgin Care came round with a clipboard and (yet again) asked me endless questions and watched the kiddo in an environment he was comfortable in for about ten minutes in order to make their assessment. Nope. The only similarity was that there was actually a clipboard with a tonne of questionnaires, only this time the consultant had assumed that as parents we were capable of ticking boxes all by ourselves. Shocker.
We arrived at the clinic on Harley Street and I immediately felt out of place. The light, perfectly painted, clean walls. The spotless sofas made me nervous with kiddo on the loose. It was safe to say, that my jeans with purposefully ripped knees and Playdoh stains on them didn’t quite fit in. The receptionist was absolutely lovely and told me not to worry in the slightest. As kiddo lay stimming on the floor, only surfacing for a chocolate button, a couple walked in who were clearly there either to have their teeth whitened or top up their Botox (the other two clinics run in the building). I know I shouldn’t have worried, but I felt so self conscious as kiddo humped away on the hard waiting room floor, that I picked up a copy of Vogue and pretended to read it. I’ve never read a copy of Vogue in my life. So as we headed into clinic my nerves were already on high alert.
We met the consultant and I felt much more at ease. He was dressed in jogging bottoms and a t shirt. Phew, I can engage with this man. The Hubby and I were asked to go and complete the standard endless mind numbing questionnaires as usual, whilst kiddo’s Nan stayed with him and the assessment began. Unfortunately, there were wooden bricks in the room, and the temptation to build and rebuild a sodding Disney castle was seriously disrupting things. And that’s when the morning took an abrupt change.
Kiddo needed to be taken away from all of us. No distractions. He was taken to the room on the other side of a very thin wall. The room was filled with soft play, swings and sensory toys and looked like it had just been taken out of a special needs catalogue. Most children would have been thrilled at the chance to play in there. And that’s when the screaming began.
We sat on the other side of the wall and listened to kiddo’s loud and verbal protest at being separated from his entourage. My insides twisted. My head span. I was like listening to torture. I bent over in the fetal position with my mother in law rubbing my back, it was emotional agony. Every inch of my mothering instinct was telling me to break down the door. You know that moment in Madagascar where Gloria bursts through the wall in an effort to find Marty? Yep that was almost me. I was fierce and completely helpless all at the same time. I knew he was safe, but it didn’t matter. My baby was in emotional pain.
The next hour stretched out for all eternity. I felt like I was in a time warp, just begging for the assessment to end. But I was trapped. No way back, we had to finish it.
Eventually, in what seemed like a thousand years later, kiddo emerged. Completely happy. For a moment I genuinely thought I had imagined the screaming. But I hadn’t, the impossible had happened. The consultant had regulated kiddo’s sensory system. I sat for a moment trying to process this but the verbal feedback had begun and I had to put it to one side.
So, the findings. I wasn’t in a place to hear this but I had to, and I’m glad I did. I’m going to list the main points below and what each finding means to me after the journey we have been on over the last year.
1. Kiddo is very hard to regulate. He needs specialist sensory integration therapy. An NHS Occupational Therapist will not have had this training, I may as well stop fighting now.
Initially many people said to me that this was a negative thing. I don’t see it that way. I see it that I’ve now been given permission to stop that fight. I’m not giving up, I’ve simply come to the end of the road with NHS occupation therapy. And thank God, because they have caused me more anguish than most.
2. Kiddo is behind physically. His gross motor, fine motor and motor planning skills are all significantly delayed.
I don’t need to say a lot here. The NHS physio signed the kiddo off after asking him to run up and down a corridor for five minutes, the only skill he has no problem with, which I of course did tell her. I win.
3. He needs to see a clinical psychologist and take part in a course of intensive interaction.
Now I don’t know exactly what intensive interaction is, that blog will come later. But the fantastic thing about this is that the Learning Disability team have said the same thing. Wow – for the first time since starting the appointments we have some consistent feedback between Devon NHS and Great Ormond Street. And that’s because that team have been fabulous. They don’t judge, they don’t jump to conclusions, they listen. We are very lucky to have them. Now we start down the road to helping kiddo manage his behaviour, and guess what, this time we won’t have to pay!
Needless to say I left this assessment in complete emotional disarray. Concerned for the kiddo who was now completely calmed and chilled, totally focused on the idea of having “chippy chips and milk” as we promised him a McDonalds. And yet light as a feather. Because yet again my mummy instinct was right. All those fights and trying to get people to understand my concerns, I was right. The kiddo is so complex that it took an international expert to draw the conclusions. The same conclusions that me as a simple mum (and inexperienced in the eyes of Virgin Care and the NHS) had also drawn, just from understanding my child. I think that says it all really. Never underestimate mummy (or daddy) instinct. We are on the same level as internationally recognised specialists.
Thanks for reading,
4 thoughts on “The Story of Great Ormond Street. The Sensory Assessment. ”
I’ve just discovered your blog and you seem to write bravely and honestly! Good luck with your journey. I’m not a parent, just a sibling, but I know it can be tough.
LikeLiked by 1 person
You’re not “just a sibling” – siblings feel the heat too. We haven’t had any more children since kiddo but I’ve done a lot of work with young carers in my time and siblings are just amazing in how they help the family. Glad to have you aboard as a reader!
Oh Danielle, how agonizing for you. I wish your family all the best as you start the new treatment xx
LikeLiked by 1 person
Thank you lovely xx
LikeLiked by 1 person