Author: Steve Antipolo

It seems fairly obvious to me after visiting this morning that Zoey doesn’t want to be told what to do. She’s an adult and, let’s face it, who really wants to be told what to do all the time?

A LD nurse was trying to get her to use a speaking mat to communicate. She is missing the point, it’s not just that Zoey doesn’t want to talk it is that she doesn’t want to interact at all. So, it’s not that she doesn’t have the ability to communicate, she doesn’t have the desire to.

I am not at all sure she will talk when she comes home either, whenever that might be.

The worrying thing is, the Zoey which is emerging may not be one who would fit in with a family environment any longer. In a place of her own, if she chooses not to do things like washing or communicating at all then it isn’t an issue, she doesn’t have to much like where Jermaine is. There is no point pushing him to achieve anything as it isn’t going to happen. Zoey is now like that. To get her to do the basic is still taking a fair amount of effort I think. More than one person is insisting that she get on and do things like getting washed so it is happening. I don’t think it’s overly successful despite what they tell me as her hair hasn’t looked cleaned and brushed in days. To put that level of care into the home situation is going to be costly and very intrusive for the rest of us as they effectively turn the house into a care home.

I want Zoey to come home, she’s still one of my girls and I need to be there for her, on a practical financial level, I need her to come home but, right now I can’t imagine how it is going to work.

This morning, thought I got loads of smiles, she made it quite clear where the boundaries are. Anyone trying to get her to do something she didn’t want to do got an evil glare. She stormed out at one point only return a moment later realising that everything she wanted to do was still in the room she left. I did feel, personally, like I was somewhat not needed so left. I was hoping there might be a reaction to my leaving but apart from a glare which I couldn’t translate, there was nothing

Another good visit with Zoey earlier. Took her iPod into her, had to lend her my skull candy headphones. Also I drove to Milton Keynes and collected an IKEA catalogue for her to look at.

She got even happier when Dennis came online. It’s annoying that it’s near impossible to use Skype video on a phone but, better than nothing.

With the continence we’re having maybe one accident a day now and Zoey is making an effort to get to the toilet but not quite getting there, I think she’s still feeling the after effects of the UTI she had.

She’s still not talking but I think that will change when she leaves. Cleanliness is still a slight issue but she’s getting there.

What worries us is that they are still referring to her being there in months time. We’re thinking more a week or so. The reality is, the issues she went into hospital with are now resolved. We need tweaks on the hygiene and continence but I am still quietly optimistic about those happening soon. But, will they recognise where the mental health issues have stopped and what they are left with is ordinary learning disabilities Zoey? We’ve got this fear that she could spend the rest of her life in an institution because they are not well enough experienced with LD to see that LD is the only issue.

Look, I don’t want to be overly optimistic here so let’s be cautiously optimistic.

I had a really good visit with Zoey last night, a real turning point I thought.

We had some serious interaction and for the first time she said she wanted to come home. She didn’t just say it she really said it then hugged me sobbing for around 10 minutes.

There was a worrying aspect to the visit though. Zoey isn’t really talking except when she gets really emotional. I felt she wanted to talk but that she was stopping herself. Rather than tell or ask her to speak I did a series of questions with nod or shake head answers. I am going to simplify what went on for about 15 minutes. In a nutshell she was scared and said that someone there has told her she isn’t allowed to talk. I was getting to the who when she couldn’t answer any more and got very upset. She certainly gave me the impression she was scared. Obviously that’s worrying and I did report it to a staff member. I intend to do so again to a higher level staff member.

Today was another mostly good visit, certainly between me, Sean & Zoey. Annoyingly we became aware that once again no one was watching Zoey or taking an interest in her needs. I discovered she was still in pads despite being told they wouldn’t be used any more. Further, I noticed that the pad seemed to have leaked. I asked Zoey if she was comfortable like that and in a very relaxed way she said she wasn’t and we went to her room so she could use the toilet. Imagine my despair when I discovered she didn’t have a change of clothes there!

Zoey was quite upset because she obviously did want to use the toilet but couldn’t.

I asked staff members until I eventually found someone who’d check the laundry, we discovered some of the clothes but a significant amount had gone missing.

What followed was an unpleasant confrontation with the head nurse. This nurse was trying to tell me that sometimes mistakes are made and it’s not unacceptable, I told her quite bluntly it was always unacceptable. She said that just because they didn’t check Zoey or look after her clothes or make sure she could use the toilet, that didn’t mean that hadn’t achieved anything. I retaliated with the fact that I’d never for one moment connected any such thing. I’d merely pointed out that our priority area of concern right now was Zoey using the toilet and not wearing pads and asked why it was so difficult to concentrate on that one task, how comes they couldn’t recognise in hours what we’d discovered in minutes? There was no answer, just a shrug.

So, complaint again tomorrow and I am so getting sick of complaining all the time. I should be able to relax knowing my daughter is somewhere safe and being cared for properly.

The sooner we can get her home the better.

I obviously had to replace the clothes, that’s £112 it cost me, money I don’t really have as the government has taken away my income of course because Zoey is in hospital and, when someone is in hospital, no one at home can legally be caring for her!

Nothing has really changed.

Ironically, the two things we’re waiting to get resolved are both things which were not an issue when she went into hospital!

Legally she’s on a Section 3, for those who don’t know, this means that until such time as she has improved she is imprisoned for her own good for 6 months and then indefinitely subject to reviews.

It’s not a nice thought but it is the reality. If she gets better then she can be sent home. Right now I just don’t know ‘if’ she will get better. They know she needs speech therapy and continence advice, there is a significant waiting list for both. So, in the meantime, they’re just hoping the situation sorts itself out as they are not really doing anything except babysitting from what I’ve seen.

Social Services have apparently allocated her a new key worker to assess her needs and place together a revised home package, they have so far not managed to contact me with this information though.