Help Joel, Marley & mum get respite!

Hi my name is Tracy and I’m a single parent to Joel. Joel is 21years old, disabled and has special needs. He is classed as a SWAN (syndrome without a name) because he is still undiagnosed with a syndrome. What we do know though is Joel has severe refractory, uncontrolled epilepsy, he can have up to 200+ seizures a day. He has a diplegic stance, meaning he walks like a toddler/drunk man and doesn't have proper control. He can't hop, skip, jump etc. he can't talk, he uses small amounts of makaton, which is often his own version! He is double incontinent, he has bowel problems, reflux, ADHD, autistic tendencies, behavioural problems, severe anxiety, especially in transitions, no sense of fear or danger, sensory processing disorder, problems eating and drinking and sleep disorder. I'm sure I've forgotten something, but you get the idea! He is also the most handsome, cheeky, hilarious young man you will ever meet.

We also have a gorgeous big dog called Marley.

Joel has been to respite places in the past and has come back severely hurt. He had a deep hole in his head, the shape of an almond. At the other place he came back what looks like carpet burn, all the way down his back. Both times they DON’T KNOW HOW IT HAPPENED despite him meant to have been having 1-2-1 staffing.

A few years later and I was open to trying an adult home, but that did not go well, so now I am choosing what I consider to be the best and safest option for Joel and that is to have night staff at our own home instead.

In order for this to be suitable to give me respite, I will need to leave the home on those nights. Because otherwise I will still hear Joel and he will still want me to deal with him.

I will also have to take Marley with me too.

I believe the cheapest and easiest way for me to do this, baring in mind not many places allow big dogs, is for me to buy a campervan/motor home. This would give me and Marley a place to sleep, whilst also giving me some freedom to travel. I was thinking of a little one man birth, but then I thought, if I had a bigger one, I could also take Joel on holidays. Im sure you all know how much more expensive disabled homes/holidays etc are. But if we had a motor home, we could go anywhere without worrying about the extra costs.

As a single parent to Joel, I have been on benefits for most of his life, due to caring for him 24/7. So unfortunately money is not easily readily available or gained. I have managed to save some, but from what I’m seeing, I’m going to need to double it somehow.

so here I am, reaching out, to humbly ask for any help you can offer, towards providing respite opportunities, as well as holiday opportunities for us as a family. We don’t ever ask without giving in return, but this time, all we can offer in return is heart felt thanks and lots of photos of Joel (and me and Marley) enjoying our travels.

Thank you so so much for any penny you can spare in these cost of living times, to help towards a camper van/motor home.