After an incredible few days away at the autism friendly caravan we’ve come crashing back down to earth. An awful week. One that has certainly tested us. I’ve cried too much and my mental health has taken a pounding.
Reilly has been off school pretty much since the beginning of March, he returned for a couple of week after the holidays but was short lived when he had to go back off to isolate for 2 weeks. Getting Reilly back into school this time has proved the hardest yet. I cant sleep worrying about how he’ll be in the morning. We’ve even taken him in pyjamas as he gets into so much distress getting ready in the mornings. On Wednesday morning I just cried I felt so hopeless. Shane had to drive and I had to try and keep him safe, guarding the handbrake. He hurts himself, sometimes really badly and it literally breaks our hearts. We pulled the car onto the drive when we returned and just sat there “are you ok?” Shane said. One look at me told him I wasn’t. He put an arm around my shoulder and we just sat in silence. The worst day we’ve had to date but it actually spurred us on to chase some services. Shane contacted social workers, front door service, made lists of things we need help with – I won’t publish it but it makes for heartbreaking reading. For the longest time I’ve just said we’re ok, we’re doing it but we’ve reached a point where I can actually say we need some help over here.
I honestly couldn’t do Wednesday it was just too much. I am so lucky that I have friends who get it. They were shocked themselves to read our help list. I have other parents who get it on hand to talk. What about those who don’t have that?. Those who are single parents/carers/grandparents who don’t have that understanding ear it when this whole COVID thing subsides someone to go for a coffee with. I’ve got that should I need it. I NEED to talk when things aren’t going well but not to just anyone. There is nothing more soul destroying than pouring your heart out to someone, who through no fault of their own haven’t a clue. Sometimes you need that deadpan honesty, empathy and often humour that can only be given by those who truly know. While feeling like this I thought it was time to talk to you all about the new service Life of Reilly is working on. Buddies. We need volunteers who get it. Someone you can call, text, ring, Skype, meet when you need it most. Of course buddies will he matched too. They’ll be checked and receive some training. Community buds is in early planning and we would look to provide people, age appropriate to allow some respite in terms of accompanying a young adult to the cinema etc enabling parents a couple of hours break or someone to help you with an appointment or shopping. Peer to peer support is proven to work. With services stretched and waiting lists long it’s time to get proactive. I’ll update you all soon.
For now I’m trying to kick in some self care and follow advice given by my peers. Thankyou to those who have helped us this last week.
Love this kid. We find it hard, he finds it so much harder. He’s incredible. We got you Reilly xx