December 20, 2016

Lorraine’s moving speech to the Playskill 2016 AGM

A month ago Jesse and I met a neonatal neurologist at UCLH hospital in London. She approached us, said hello to Jesse and burst into tears!
Rewind to nearly 3 years earlier and in that same building my husband and I were told, after a rather long ultrasound scan, that our unborn child had part of his brain missing as well as other anomalies, would be highly disabled, dependant on us for the whole of his life and recommended we terminated the pregnancy. My husband and I said no to the termination on religious grounds and thus Jesse was born in July 2014.
In the subsequent 2 ½ years since Jesses birth we have had numerous tests and assessments to find out the reasons behind Jesses physical and developmental delays but as yet we are still without a definite diagnosis so Jesse is a SWAN (a syndrome without name)…and I know some of you also have lovely ‘SWANs’ too.
So going back to the neonatal neurologist at UCLH who is crying….why is she crying? Has she got bad news? Is she in despair of what she sees? No, this neurologist met Jesse when he was 6 weeks old, at 12 weeks she assessed him and told us the future still looked bleak and Jesse was sure to develop some form of cerebral palsy and referred us to the Bobath Centre in North London. So when said neurologist sees Jesse after nearly a year of not seeing him the tears flowed (mine did too) and she cannot believe that this is the same child, that he is walking unaided and talking and although delayed doing remarkably well. She turns to me and says “I was completely wrong!”
Now I’m not saying the ‘experts’ have no idea what they are doing and should quit their jobs, neither am I saying that it’s a total miracle and Jesse is somewhat ‘cured’ I’m sure we still have some pretty steep mountains to climb. But what I am going to say is that Playskill has played a significant role in allowing Jesse to prove he wasn’t a write off!!
When I first came to Playskill, with Jesse, I was under the impression Jesse should be wrapped up in cotton wool and that he really shouldn’t be pushed in any way as he was too ‘delicate’ to try things. How wrong was I, nope that’s exactly what Jesse needed, he needed to be pushed, he needed to be exposed to messy play or soft play, he needed to be given an opportunity to prove everyone wrong. And that’s what’s amazing about Playskill, Andrea and the team in a loving way don’t pay too much attention to what the ‘experts’ say but allow the child to rip up the script and show everyone (but especially mum and dad) how wrong they can be, that a diagnosis or even non diagnosis means very little to the child if they are given an opportunity to shine, if they are encouraged to reach their potential and if they are just given a chance!
So, this is my opportunity to thank Andrea and the team…and in particular Debbie Kitts (Jesse’s keyworker). To thank you from the bottom of my heart for giving Jesse that opportunity to prove us all wrong and chuck out the rule book, which he loves to do, and allow him to just be Jesse and to shine!