March 25, 2019

AGM 2018 – June’s Speech

I’m June. Mum of Louis. Who has been going to Hemel PM group for 1.5 years. Prior to that he went to Watford. I’m going to tell you a bit about Louis and the enormous benefits Playskill has given him.

Louis is 5 years old. He lives at home with his parents and 7-year-old sister. He’s a happy, easy going, sociable little boy who is determined to participate in everything. He loves going to school, is mad about trains and enjoys swimming and horse riding but best of all he loves having his friends over to play.

We knew something wasn’t right with Louis from about 2 as he was delayed with his Gross Motor Skills and his speech. But we were hoping he was just a bit late with his development. When it became apparent this wasn’t the case the worry and uncertainty was awful. He was referred to GOSH and had numerous tests. The doctors were beginning to eliminate certain serious conditions but there was still an awful feeling of the unknown. Just over a year ago Louis was diagnosed with the rare genetic condition, HSP. There was a sense of relief as it wasn’t as bad as it could have been but it was still a devastating blow. We knew something was wrong but now we had the answer it was final. The faint glimmer of hope I’d had that he would grow out of it was shattered.

HSP causes spasticity, stiffness and weakness in the legs. There is no cure and the symptoms can get worse as he grows. Treatment is for Louise to take muscle relaxant medication, Botox injections and therapy with an Occupational therapist and Physiotherapist. Louis is unable to walk, though he can walk a few steps with an aid. He also needs help accessing things, going up and down the stairs, in and out of chairs and all of his self-care needs. Coupled with that, though unrelated to HSP, Louis has severe difficulties with his expressive language. He needs help to interact with others and make himself understood.

So our life as we knew it was turned on its head. I reduced my working hours and we had to move house to a more practical property for Louis. We’ve also had to learn to cope with the physical and emotional challenges and adapt our lives to meet Louis’ needs.

So along this journey, we found Playskill, as the health visitor mentioned it in passing. I called them and spoke to Andrea who said to come along for an assessment. We were offered a place and I can honestly say I thought we’d be there for a term as I was still in denial. We’ve now been coming to Playskill for 3 years and have never missed a session. I’m not exaggerating to say that they’ve been an absolute lifeline to us. I honestly believe that Louis wouldn’t have made the progress he has without this group. Each week Louis receives Physiotherapy, Speech and Language and Occupational therapy. These fantastic therapies and specialist workers work through play to help him and teach us, the family, skills to help him at home.
Physiotherapy has helped improve Louis’ mobility, balance and strength.
Speech and Language therapy has helped him learn to speak and he now uses more words and longer words as well as learning to communicate in other ways like signing.
Occupational therapy has helped him become more independent by learning to dress, eating on his own and by improving his hand strength and dexterity.
The specialist workers support him with all of this and more and I would like to say particular thanks to Kerry, his specialist worker for 3 years.

The therapy he has received has been invaluable and you cannot get this level of care on the NHS as it is just not available. The environment is warm, friendly and supportive. The therapists, specialist workers and volunteers are nothing but positive and make you feel that you don’t have to face this alone. They’ve been a fantastic support to us as a family and helped us get through these last couple of years. During the sessions there is a chance to meet and chat to other carers and parents. It’s lovely to meet others who are in the same boat and great to share information and practical tips. Playskill arrange social events too, like evenings out and summer trips to Willows farm, sailing and lots of parties! Playskill also put on talks/seminars about a range of topics including, physiotherapy, communication, toileting, EHCP and benefits. There is no one else who tells you this stuff. These talks have helped to raise our awareness of what is available for disabled children and what our rights are.

It doesn’t bear thinking about where we’d be if it wasn’t for Playskill. I was really thinking about the aspirations Louis might want for himself.
1 – independent
2 – learning to be confident
3 – to be able to communicate
4 – to thrive and grow and reach his full potential.
Playskill have had a vital role in helping Louis achieve these.

Playskill – thank you from the bottom of my heart.