Respite to the rescue (part 2)

So the lovely people from the hospice came over for our assessment and to properly meet Sam. As usual there was a million forms to complete, but I’m use to all that and to have to answer a whole lot of questions. I did find it difficult when they would ask whether Samuel likes this or that as it’s hard to tell. We know he likes being held and cuddles. We just accept that he tolerates other stuff – which basically means he doesn’t get upset or the item/activity in question doesn’t start off a seizure!

Anyway, we have our first play session at the hospice this week and I’m really looking forward to it. They said that I’m welcome to stay for the sessions (alot of parents do just to see what happens and how the child responds) or maybe go off somewhere for a coffee. It could be a good opportunity for a break.

They do arts and crafts and even baking with the children and when I enquired as to whether they still do all this with chilren who are very limited like Samuel, the nurses said that they most definately do and I’d have to get use to him coming home with lots of paintings and so on.

There is also a dedicated play lady who devises a special plan for the individual child and she has had some really good results. I actually had a look on their website last night and this lady was mentioned and she sounds marvellous.

The ladies seemed to really understand me, but then I expect they’ve heard my exact same story many times before. They realise that I’m keen to meet other parents so have said that they will put me in touch with some of them and apparantly the parents often arrange trips out and get togethers amongst themselves.

We of course talked about respite in the home. A carer coming here to look after Samuel. If I’m home (apparantly some parents choose to still be at home when carer is over but uses opportunity to have a bath, a snooze or do other things or they just enjoy the company of another adult around) then they will only send one carer but because of Sam’s level of needs if I’m not home then they will send two carers. I still feel a bit strange about having respite in the home, not sure why, but I think that if I start by being involved with the hospice and leaving Sam there, then I’ll get use to the idea of them looking after him at home.

I’ve also decided to stop referring to it as the hospice. I don’t like that phrase. Instead I will refer to them by their name, Julia’s House. I think that is much nicer.

I think becoming involved with Julia’s House could be a real turning point for both Samuel and me. For me it not only gives me the opportunity for a break but also the chance to meet other parents like me and a chance for me to feel normal. For Samuel, well he’s going to have a load of new people to cuddle and adore him. He’ll have more people to help him and bring out the best in him.

I just can’t wait.

6 thoughts on “Respite to the rescue (part 2)

  1. Sounds absolutely wonderful. I’m sure you will both love Julia’s House. Maybe if you think of the home visit as someone popping over, a friend, you might feel more comfortable with it.

    Go at a pace that suits you and Sam as its change for both of you.

    Looking forward to updates and pics of Samuels art work and baking creations 🙂 xx

  2. Thanks, they really are lovely people who just want to support parents and get the best out of the children. You are right about the home visits, I think it’s just cos’ it’s something new, I’ve never done it before.

  3. I am glad it is all coming together now. Our local hospice (hate that word) Acorns is lovely too. We are still using it as a family day out to use the pool and for someone else to help with H while we concentrate on his big brother for a change. There’s no rush but when you feel ready, a break away will do you good even if its for an hour in another room. 🙂

    • I know, I think it will be nice to have the pressure taken off. As you know you’ve got to be watching them all the time cannot leave them for very long at all, so to have someone else watching him once in a while just means I can switch off for the odd 5 minutes! Glad you are enjoying using Acorns and it is working out well for you. x

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