The Story of Great Ormond Street: building a sensory program.

Earlier this week the kiddo and I ventured back to London for a follow up appointment. At the end of last year, we visited various clinics and professionals to get a multi disciplinary assessment done through private healthcare. We were concerned that there were question marks over some of kiddo’s behaviours and challenges that the NHS did not cover. After fighting for additional investigations for many months, the time had come to either put the fight to bed, or move on to a different journey. We were very very fortunate that we had the funds available to us to continue our hunt for knowledge and understanding in our country’s great capital.

I want to stress that this journey for medical answers was never ever about changing our amazing kiddo. It was about helping us understand and learn about the challenges he faces, how we can help him and making sure that we were parenting him in the most appropriate way. I guess in a selfish way it was to help us as parents more than to help our son. But I would never forgive myself if I had parented him in a way all these years that was only damaging his self esteem and causing sadness and anger in our relationship, rather than the love and comfort a child should receive from their parents. So off we went.

If you’d like to read up on how the appointments went, please check out the series of blogs “The Story of Great Ormond Street”. But for now, I bring you back to the present day.

Shortly after Christmas this year all the paperwork from these appointments came landing on our doorstep with a heavy thud. Not heavy in the physical sense, just full of emotion – that need and want for some guidance on how to help our beautiful child. As I opened letters and clicked on emails, my heart felt heavy with apprehension. Had the damage already been done? Had my neurotypical parenting caused too much anguish for our child already only at the age of 3? Thankfully, it seemed not. All those books and articles I had been reading over the last two years had apparently paid off! But there was still so much more to learn.

We decided to follow up one appointment in particular. The sensory assessment. We had come to realise that kiddo’s sensory profile was extremely complex. So complex in fact that occupational therapists working for the NHS did not have the qualifications necessary to help and guide us (that came directly from the horses mouth, an OT lead in our area confirmed this was true). If we wanted to learn how to help kiddo regulate his senses we were going to have to speak and learn from an expert. The conversation needed to be tailored to kiddo’s profile too, no book could solve this challenge.

So off to London we went, back to the Hopscotch Clinic at London’s famous Harley Street. What were we expecting? I have absolutely no idea. What were we hoping for? Ideas. Ideas to help turn play and activities into a way of helping kiddo access sensory integration therapy. And that’s exactly what we got. Our hope for a certain outcome was actually fulfilled!

As the session began I was apprehensive. After all, the last visit we had had to this clinic had sent Kiddo into emotional turmoil simply because I wasn’t allowed in the assessment with him. This was clearly the right decision, but listening to his screams for me wasn’t just heart breaking, it was heart shattering. But today was all about me learning, so I was able to come in and observe a master at work. And wow did I learn!

I watched as an expert conducted sensory activities that I would have never attempted due to fear of over stimulating the kiddo. Did he over stimulate? Hell no. Kiddo was calm (for him) and engaged. Certain activities even appeared to start sending him into deep relaxation! I learnt how to combine activities to help multiple senses, strengthen his muscles and help him regulate his body. I felt like I was standing inside a whirlpool of the most fantastic information, all swirling around me and I just didn’t know what to access first. After over an hour in the sensory room, kiddo went off with his grandparents so I could learn even more.

My eyes lit up when I was presented with books to read – reading about autism and sensory processing has become a frequent pass time of mine, and when they come highly recommended from the experts my brain practically drinks the words from the pages and retains them in a reservoir of information somewhere in my soul. I was going to be able to help my son.

We are now awaiting a bespoke sensory program to be written for the kiddo. We will implement this in his play and his school are on board also. The whole tone of this appointment seemed so different to me from the others. I guess that’s the difference between diagnosis and therapeutic sessions. We knew what we were dealing with. But we didn’t know how to deal with it.

My heart felt thanks goes out to Dimitrios Mylonadis at the Hopscotch Clinic in London. A true master at work, not only in his knowledge and practice of sensory integration in children, but also in dealing with over enthusiastic parents like me 😉

I’ll update you all on how we get on introducing the therapy at home over the next few months. Until then…

Thanks for reading,

Danielle

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