I am employed as an Inclusive Living Advisor with Take Ctrl (South Lanarkshire). I enjoy working as it is rewarding and it gives me time to get out of the house and feel I am helping others through sharing my personal experiences.
So now to tell you a little about our family and how caring has impacted on our lives.
They say 3 is the magic number and it certainly was in our family as we had 3 children attending 3 separate schools, 3 sets of uniforms, 3 different transport arrangements, 3 sets of parents nights and more! Growing up for our children was not easy and we have had many challenges throughout this time.
Our middle child Gary is now 23 years of age and he took his first seizure at the age of 5. He has drug resistant epilepsy, learning disability and ADHD and was diagnosed with autism just last year.
As the years have passed his condition has progressed and following a short stay last year in Quarriers he has now been diagnosed with having frequent, complex, partial seizures.
He has seizures on a daily basis and often requires rescue medication. This has been a barrier to us accessing regular respite services as rescue medication was not licenced for use in children.
When Gary was younger getting a break was unimaginable. In fact, getting to the shops for groceries or having a bath in peace was virtually a non-occurrence. Most of my time was spent either on the phone or writing letters – I’m sure many of you know how difficult it is to access support from the statutory agencies!
We struggled to get a break together and often it would end up that I was left in the house looking after Gary while my husband took our other son out for the day. We got to the stage where we did not make plans as we couldn’t keep them. Friends would come to our house yet we would never be asked to theirs. I was feeling very isolated and frustrated as other people seemed to be getting their lives back. They were able to do things and go places as their children grew up and were old enough to be independent.
We are now in receipt of Self Directed Support and I manage Gary’s direct payment to ensure he has the care he requires. We have created employment for Gary through this and he has carers who are employed to help Gary with his business. Gary looks after chickens and is selling free range eggs to family, friends and local organisations with the help of a start-up grant from The Princess Scottish Youth Business Trust.
I cannot imagine there are many 23 year olds running their own business and he has fantastic support from his Personal Assistants past and present to do so. This has helped build Gary’s confidence and he is so enthusiastic about his chickens. He is happy and so we are happy! I don’t think any parents would want anything different for their children whether they had additional needs or not.
Through my experiences of managing Gary’s Self Directed Support I have become more interested in the whole idea of personalisation and how it all works. I have recently gained employed as an Inclusive Living Advisor and hopefully because of my personal experience will be able to help others go through the process to enable them to have as fulfilling a life as possible.
You can watch a video about Gary on the SCLD Website…