I wrote yesterday that I would be attending Joshua’s Care Review meeting and I rushed back from dropping Joshua at daycare and got home with ten minutes to spare before it started. I have never used Teams before but these were not in person meetings yet. Since leaving work, I have not sat still at a desk for over two hours, so I am out of practice! It was hosted by Joshua’s Social Worker and as well as myself, the manager of his respite facility, a representative from daycare, his epilepsy nurse and a ‘Deprivation of Liberty (DOL) Officer attended the meeting. I was using my mobile phone rather than my laptop and I was impressed at how well it worked, with the faces of attendees along the bottom and the document we were reviewing above us on my screen.
I had set the scene by sending yesterday’s blog to my Social Worker when I wrote it, so that she could see my positive outlook on Joshua’s progress. I was delighted when she referenced it several times during the meeting, showing that she had clearly read it and understood my perspective too. I do not think in Joshua’s lifetime that I have attended a review meeting that was quite as positive. Previously there have been negatives to address, such as his kicking behaviour at school, the battle with the incontinence service, the need to change schools or Joshua’s seizures to name but a few that come to mind. So it was refreshing to be telling everyone how well his language is developing, how engaged he is in life, how his seizures are reasonably well controlled, how he is eating well and gaining some weight and how brilliantly he has settled in at Daycare. Consequently I have never enjoyed a Review meeting more, despite the fact that we had to follow the ‘domains’ in some new paperwork and that the conclusion was that Joshua’s basic care needs remain unchanged – he still needs help dressing, feeding, taking his medication and keeping safe.
The DOL officer was asking some bizarre questions about Joshua’s liberty: were his feet strapped down in his wheelchair, as well as having a lapstrap? Does he have any special safety precautions in the car other than a seatbelt? Are the doors locked at daycare or would he be free to leave? The implication is that now that he is an adult, he should have liberty, yet, for his own good, he is deprived of the normal freedoms that most 21 year olds have. She will prepare an application form and it will go to the Court of Protection, to argue that all of the deprivations in his life are in his ‘best interests’. This was one of the two times during the meeting that I got tearful – I was famous for my weeping at school as it is all so emotional. But I get upset at the suggestion that what we do for Joshua might not be in his best interests. I know that there are too many media cases when parents have shown themselves to be untrustworthy in the care of their children, but I know that I would die for my son, I will do anything to keep him happy and safe, even if, as in the case of during the pandemic, at personal detriment to myself.
The other time that I became tearful was when the representative from daycare was telling the meeting how delighted they were with him and how well he had settled in. I knew it for myself as I have seen it with my own eyes, but to hear somebody else say those words made me weep with pride for my adaptable, sociable son.
So a successful meeting with a few actions to be followed up. Joshua used to wear, and hate wearing, an epilepsy helmet at school and daycare, to protect his head when he fell with seizures. We only wore it at home when he looked like a seizure was brewing, as he hated it so much – he would pull at the chin strap asking you with his eyes to remove it. He has not worn his current one since 2020 and even back then it was tight and left a mark on his forehead where it rubbed. So we ought to get a replacement that fits, just in case he needs to wear it again in the future. It has been so long since we got his current one that I could not even recall which service supplied it or how to get hold of them. The epilepsy nurse confirmed that he needs a referral through the GP to access a new helmet fitting. He will not be impressed but it is in his best interests to have one that fits, even if it mainly remains in his wardrobe!
As I concluded yesterday, onward and upward Joshua!