Florence's story

florence

"To give you a bit of background about our situation, we have three children and our third child Florence, was born in 2018. At ten days old she failed her newborn hearing test and we learned that she is deaf. We were coming to terms with this, when at three months old, she was diagnosed with West syndrome. West syndrome is a extremely rare, and very dangerous type of epilepsy. For the next few months Florence was like a newborn baby again, and we were told to expect the worst. As a family we were lost, scared and extremely worried for her future.

We were supported by the NHS and were seeing a Speech & Language therapist, Physiotherapist, and a Teacher of the Deaf every two weeks. Unfortunately due to her condition she was making little gains.

In December 2019 I heard about Playskill, a local charity supporting disabled children in their learning. I enquired and I was so happy to be given a place for Florence starting the next year. I’m sure you can guess what happened next…. Covid hit! I found myself at home with a disabled one-year-old, a three-year-old who should have been in nursery, and a four-year-old who should have been in reception. Whilst Florence’s hospital appointments and surgeries continued (she had four general anesthetics during the first part of Covid), all of her therapy support from the NHS had stopped.

As a parent of a disabled child you are told early intervention is key. This was extremely daunting and we felt very alone. Here came Playskill. Whilst we couldn’t meet in person we had weekly zoom sessions with an Occupational therapist, Physio, and Speech & Language therapist. It was so lovely to see friendly faces every week, and to be reassured that we were doing the right things with our daughter. To our amazement during this time at 23 months old Florence learnt to crawl.

When the Playskill sessions were back in person - it actually felt like Christmas for me! Getting to interact with the people who have supported us so much and meeting the other parents of children with complex needs was so very rewarding. You can often feel very lonely when you have a disabled child.

At the start of every term the children at Playskill are all set targets by the therapists. Each week we go to a session and Florence gets to spend quality time with each of the professionals. Since Covid we get to see the NHS team potentially twice a year so we are very very grateful for Playskill’s input. At a Playskill session, when Florence competed her first target after months of trying, (putting objects into a basket), the whole room applauded!

The team at Playskill are truly amazing, they work so hard to help improve our children’s lives. Our daughter now has Cochlear Implants to help her hear. She’s been registered partially sighted, intellectually disabled, and last year she had an operation to put her hips in place, followed by a six week stint in a full body cast. Playskill have supported us so much throughout this rollercoaster ride. When Florence came out of her cast, we worked really really hard with them and the physiotherapist. I am so proud to say that Florence began to walk for the first time!

Florence‘s epilepsy journey has continued to be rocky. But what the Playskill team have taught me, is to try and enjoy every little success with Florence. Recently in class Florence is successfully learning to use a fork, and her listening and anticipation skills have progressed beautifully too.

Playskill is so much more than a weekly therapy session. When my older boys are invited to one of the family days they are very excited. It’s been wonderful for them to make friends with other siblings who help care for their disabled brother or sister, in a really fun environment. The parent support has also been fantastic, there is a special team who can guide you through EHCP, school places, support at home, respite etc. I personally have had many conversations with them, receiving brilliant advice and support, most often from a parent who has been in a similar situation to myself.

The other part of Playskill we as parents really appreciate, are the parent training sessions. These trainings give us a chance to learn new skills and understand our daughter more.

Playskill supports our whole family. If only Playskill was world wide, every disabled child and their family would benefit so much. We are very lucky, and very grateful. Thank you Playskill." - Sophie