Jacqueline and James – ‘Getting it right for every child’

“It feels like they are saying my son’s life ends when he leaves school...James deserves better."

It would be good to have some positive options for James’ future. There has been a dark cloud hanging over me for years thinking about what he will do after school. I feel that I have constantly not been listened to or told not to worry about it until nearer the time. Well, he is 16 and now is the time for us but still there doesn’t seem to be a suitable destination for James.

Every parent worries about their kids leaving school and going out into the world, but ultimately most young people are capable of making their own choices, but I have to make decisions for James and when there are no options, it makes me feel totally helpless.

Good for us would be true overnight respite, with good staff that James knows and, more importantly, that know him and the care he needs. Going on holiday with James is just not feasible for us. He likes specific things, his Elmo toy, going for a drive in the car and singing. We do the same things, at the same time, every day. He is such a happy guy but taking him away to an unfamiliar place would not be a break for us and it wouldn’t be good for James. So having overnight care provided in our home would be amazing for our family. It would allow us to have a real break. We have never been on holiday and my daughter is desperate to go on a plane!

During summer holidays a lot of families plan summer activities for their children. We have been offered just five days over seven weeks. It is pathetic! I watch my child self harm and lash out because he is frustrated, bored and misses his friends. I am a teacher so I am off for the holidays, but I spend all my time caring for James. People tell me to care for myself but when do I have time for that? That is what families at James’ school desperately need, we need people to understand what this is like day to day. It is intense and overwhelming. I feel like a prisoner in my own home sometimes as James needs a high level of care and can never be left unsupervised.

If I had the chance to say one thing to the people in charge, it would be to start listening to families and actually take on board what we are saying. The people that make the decisions on James’ future and that offer us unsuitable services should come and care for him for a day. Every family is different, and every child has different needs, but they don’t have a clue and they are making huge decisions that have a life changing impact on people’s lives.

For me it has been 16 years of acute stress and a constant fight for everything – for medical supplies, equipment, education and care. We have had a lot of happy times and have great memories but why do we have to fight? It is relentless and suffocating, there is no escape for me, but a bit of empathy would help. If I am worried about transition, help me. Put things in place and make a plan for us because at the moment it feels like they are saying that my son’s life ends when he leaves school. They talk about ‘Getting it right for every child’, they aren’t getting it right for my child and James deserves better.

Read more Humans of Scotland stories here.

End of page.