“Good evening all – please bear with me as this is more than a little out of my comfort zone and I’m a nervous wreck! Apologies for reading from a sheet but learning a speech by heart just wasn’t going to happen! I wanted to make sure that nothing was missed and this is the best way.
My name is Liz and I am mum to William (who is 8), Elsie (who has just turned 4) and Leo (who is 14 months old). Elsie has been attending Playskill’s Monday AM session since May 2017. Elsie threw our lives into chaos from her very first moment. My gender scan at 4 months revealed that we were having another boy – a little brother for William. I went through a pretty unremarkable pregnancy, William bought him a Batman onesie and we couldn’t wait to welcome Edward or ‘Teddy’ into our family.
In the early hours of Halloween 2015 my baby was finally here – born onto my chest with as little intervention as possible. I lay there looking down at a little mop of dark hair and telling ‘Teddy’ all about how excited I had been to meet him. You can only begin to imagine the shock when the midwives came to weigh the baby and we realised that a little something was missing (and no… the midwives hadn’t checked)! And there she was… my beautiful little girl Elsie.
Looking back now there were lots of early signs but at the time I was just told that my concerns were nothing to worry about – and that all babies are different. But as a mum you just know. It was at around 8 months when Elsie still wasn’t able to sit unaided that it was finally taken seriously. That combined with feeding and swallowing problems rang alarm bells and we were referred. Elsie had all sorts of tests – initially looking for some sort of brain injury. We went round in circles of panicking that it was something, and then being relieved when it was ruled out only to panic about the next thing.
A neurologist at Great Ormond Street took one look at Elsie and asked if I had ever thought that she looked unusual. To me she just looks like Elsie – but apparently she has some ‘dysmorphic features’ and the Neurologist rightfully suspected a genetic abnormality. Genetic screening and a brain scan confirmed Elsie’s diagnosis of 16p13.11 Microduplication Syndrome. The condition is rare and very little is known about it.
We had to accept quite quickly that no specialists were going to be able to tell us anything really and that we just needed to go with it and accept Elsie for who she is. As far as we know the condition affects her with Global Development Delay, a heart condition and hypermobility along with autistic traits, a severe learning disability and various sensory and emotional issues. Elsie is non-verbal and cannot walk or stand unsupported. Despite all of that she can be such a happy little girl – a real ray of sunshine.
The process of acceptance was difficult but I had a lot of help along the way. I quickly got my head around things and accepted Elsie for who she was and not who I thought she would be. It was my perceptions and expectations that needed to change and my strong belief that I was chosen to be Elsie’s mum has definitely got me through. It was at this point, shortly after Elsie’s diagnosis, that a friend told me about a little charity called Playskill.
I didn’t really know what to expect when we went along for Elsie’s assessment. I had no idea what I was becoming part of. But it was quickly clear that it was an extremely caring, nurturing and welcoming environment, full of people who understood our situation and a hot cup of tea that I didn’t have to make myself!
The weekly therapies have made a huge impact on Elsie and the therapists work together seamlessly which is so refreshing and definitely a winning formula. Elsie has learned to cope in a busy environment (most of the time) and eventually began to enjoy circle time and singing and even messy play.
These steps to help her understand and process the world around her are massive and so important for her future. Elsie may not be able to tell me how she is feeling but it is very clear that she has formed special relationships with the staff at Playskill and she gets such a lot out of her sessions there.
Playskill has been a lifeline for me. The opportunity to meet other families who have had similar experiences is so important. Seeing Elsie develop and progress at Playskill has been amazing.
The parent training sessions are fantastic and the information and advice available from Lisa and Andrea is crucial to families trying to find their way in this world.
Our weekly sessions are so welcoming and accommodating… especially when it comes to the flock of rowdy siblings in the Watford AM group… big shout out to Anna for the crowd control!
But most of all… for me it’s like being part of a family. The past couple of years have been incredibly difficult for me and Playskill has been such a huge support. To say that Andrea and the team go the extra mile doesn’t even come close – and the help that the kids and I get from Anna through Playskill makes such a difference to our lives. Playskill is a constant in the chaos and I look forward to it every week.
I know that Elsie’s Playskill journey is coming to an end and I will never be able to thank you enough for what you have done for us. As sad as I will be when Elsie leaves I will also be proud to have been part of something so special, and Elsie will always be a Playskill Graduate.
I’m going to finish by saying thank you to Andrea, Helen and the whole team for all of their love, dedication and hard work, and thank you to everyone in this room who helps – in one way or another – to make Playskill possible.”