Tuesday, March 20, 2018

Ella - March '18

Where are we with our beautiful Ella? We shared in June '17 how Ella had deteriorated to the point that for our safety she needed moving into a residential home. We always knew that it would happen at some point, but in our mind it was always when we retired, not when she was only 18. And then I wrote a post on her 12 week review, things seemed to be improving slightly .......

Until October where she slowly started the behaviours again culminating in Christmas. And the complete and utter meltdown and nightmare that left Ella and everyone in her path emotionally and physically in a place I cannot begin to explain. Re-read the posts and you still wouldn't get a real feel of the impact this had on everyone.

And where we were at Christmas is pretty much where we still are. It's not as extreme, she hasn't had to have any hospital admissions. But her behaviour continues to be erratic for us, for the home and at school. I have only seen her once since the new year. She happily spoke to me on the telephone, but as I walked through the door all I could see was anger on her face and she flew at me. I worry whether our little girl will ever be in a good place again, and my heart hurts a little more every time she wants to harm me. Jeff managed to hold her while she was saying that she wanted to hurt me. I was concerned about the staff, much as they are all, without exception, lovely and friendly, I definitely got the impression they were scared of her. Jeff has visited a couple of times since, and although she is antsy, he has been able to have a short conversation with her.

I am waiting for a response from both hospitals. Sadly I had to put in official complaints. I didn't want to, I know how tight time and resources are in the NHS, but apparently you cannot just ask someone to look at what went wrong and how it can be prevented from happening again. Either shut up or complain. Well you know me, shutting up is never an option so complain it is.

I informed her SW and the school what had happened over the shutdown and school stepped up and organised some meetings. However, by the third one I was honestly beginning to feel we were at the point of having meetings for meetings sake but not actually achieving anything.

Her SW has been solid in his interest for Ella and trying to get the best outcome for her. The psychiatrist has also seen a lot of Ella and seems to genuinely care. The school as always have been strong supporters of Ella, well she's been there since she was 6, and with her current HLTA and teacher for 5 years. But despite all this, we didn't seem to be making progress. Jeff and I agreed we needed support so we have now employed an SEN Advocate for Ella, Jenny Hooper from SEN Consulting I'm not going to pretend it's not expensive, it is. But Ella is in the middle of a crisis and decisions made now could affect the rest of her life.

Early March we attended something called a Planning Live Meeting. We had no real idea of what it was but went along to the school where it was being held. The lady in charge had A3 paper on the wall and coloured pens. I must admit my mind went to 'Seriously?' Two hours later I was a convert to the process :) There was 19 people there from about 10 different areas of Ella's life. That alone made us realise that a lot of people are trying to help our lost Ella find her way back.

After introductions we discussed what was great about Ella. This was both heart-warming and heart-wrenching, remembering the little girl that is somewhere inside the outside shell. And the fear that if all this intervention doesn't work that we will have to permanently mourn the loss of our colourful girl.

There seemed to be a lot of health gaps around Ella that could make huge differences as the team cannot begin to look at possible causes for her behaviour until all medical reasons are excluded. We have been waiting for an MRI since September as there is still a feeling that the epilepsy could be the cause. Then other common issues include Vit D, Vit B12 (I think, could have been B6), and urine infections.

We found out that Ella has a low iron count and last November a second blood test was requested with a view to Ella needing iron supplements. But it hadn't been actioned! We've been saying how pale she is. She also has a high ALP reading, which may be to do with the Floating Harbor Syndrome and bones, but could also be to do with her liver, and we're still waiting for those result to be repeated - bearing in mind the first elevated result was last June! I try to remain calm and level-headed but it makes me beyond frustrated.

These are just some health avenues, others are also being investigated. I will be ecstatic and angry in equal measures if, after all this time, it turns out to be something easily treatable.

Once this has been done then they can look at her mental health. She is now only attending school 3 days a week due to her behaviour, and on those days she spends a lot of time on her own, anxious, unhappy and angry. This last week we had a report from the school that she had actually joined in her class assembly and had been laughing. And isn't it sad that this is such a rare occurrence that it needs acknowledging. But we'll take it, every time we get a glimpse of her former self we have hope she is still in there somewhere.

One area that I wanted addressing was the current residential home. The staff are great, we have no issues with them, and where we were last year SS had to find something quickly, with a vacancy and within the catchment of MG as nobody wanted Ella to have to move home and school. However, the other residents are all middle age and virtually non-verbal. Once Ella leaves school this will be her life 24/7. Yes, they take the residents out. Only Ella hates transitions so very rarely goes out with them. Thankfully the majority of the people attending the meeting agreed. I was at pains to explain it isn't the home, but it isn't the right home for Ella. She needs somewhere where they are more her age, that can talk and hold conversations. And, as Jenny suggested, have all sorts of facilities on site, enabling Ella to get a more varied timetable without the stress of a transition.

As I said earlier, the meeting took 2 hours, but seemed proactive. There were a lot of actions that I feel would be done rather than delayed. And then we will meet up again after Easter with an update.

We have created a timetable to let Ella know when we will phone and when we will visit, trying to calm the autistic reactions to unplanned events. So far so good, she'll chat to us both on the phone and Jeff's visits have been short but successful. However, the real teller will be when I go see her next week.


  1. Wow what a rollercoaster! Have you started to look for a new place for her yet?

    1. We've got to wait for the end of this process to decide the right kind of home :(


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