Sunday, July 23, 2017

Italy over for now

Week two, as is always with a holiday went quicker than week one. We had plans to go to Rome for the day, but when we go to the train station there was no parking ........ at 7:15am! So we decided we're going to have a weekend break next March before it's tourist season and gets so hot I get heatstroke again!

We had a phone call from Ella the second Sunday asking us to go see her. Her carers thought we were back, so Ella got very upset, sobbing, when we said we couldn't visit. But her amazing Godmother came to the rescue :) Which helped both Ella and us.

Wednesday, July 19, 2017

Ella and her Epilepsy

Finally something a little positive.

We adopted Ella when she was three and a half. Within 2 years she was having mild drop fits. She would be doing an activity and fall to the floor, would only be a couple of seconds and then she would continue with her activity. As she got older and was mobile she would have a lot when she was walking so would end up with cuts and bumps.

These continued throughout her childhood. She was seen at John Radcliffe who did a 24 hour EEG but we were advised she didn't need any medication as they didn't think it would have any effect.

When she was 12 she had her first tonic clonic seizure. Arms and legs rigid, non-vocal, a typical big seizure. She was admitted to Royal Berkshire Hospital the first time. Over the next few months she had around half a dozen tonic clonics but once the right dose of Epilum was found the seizures stopped. Again we went to John Radcliffe who confirmed she was now suffering from 2 types of seizures.

She went 5 years without any seizures, big or small.

However October 2016 she started having slight tremors in her hands, most noticeable when she was holding a cup. As parents we thought maybe she needed her dose increasing slightly as it hadn't been changed for the 5 years. The Consultant though felt it was a side effect of the Epilum and over an 8 week period weaned her off of the Epilum onto the Keppra. The rest as they say is history.

Ella has been in a state of anxiety since the reduction and removal of Epilum. She says she feels shaky, sometimes in her head and sometimes all over.Stopping the Epilum seems to have unbalanced her, as I mentioned earlier she went 5 years fit free whilst on it. In hindsight slight tremors may be a small price to pay to have Ella return to a more balanced physical and mental state.

Fast forward to today and the care home had managed to get Ella an appointment at the National Society for Epilepsy, the UK's leading provider of epilepsy specialism. We sent a written record to date as we couldn't be there. The Consultant though phoned us and for the first time in ages we felt a doctor really wanted to help Ella.

Moving forward she is to have:
  • A genetics blood test to find out exactly what her syndrome is. When she was diagnosed with Floating Harbor Syndrome there was no blood test available so it had been a clinical diagnosis but now they can actually ID it. The Doctor was not very happy when I said that she hadn't had a genetic test, when one of medical reports stated she had!
  • An MRI, a current EEG and a CT. She was professionally surprised Ella hadn't had an up to date EEG since the onset of the tremors. And even more surprised Ella has never had an MRI or a CT scan. Hmm.
  • Organising a specialist consultant psychiatrist. 
  • This will all happen in the next 6-8 weeks and Ella will stay overnight. It will feel like a mini break for her! They suggested 5 days, but Jeff and I felt that staying somewhere else so soon for so long could totally unbalance her.
So, in a nutshell, we could not be more impressed with the Epilepsy Society......but can't help wondering whether Ella has been short-changed all these years.
Friday, July 14, 2017

Italy Part 1

We are having a lovely time despite my post last time. Yes, we are missing Ella massively. But we are also resting, relaxing and getting to actually spend some time together - and we're still talking!

I hate to say it, because our children are my world, but we have realised what we are missing. Jeff arrived here without being stressed with 4 kids in the back of the car doing his head in! And we can visit places without "I'm bored!" Still love family holidays, but could get used to this too :)
Thursday, July 06, 2017

Visiting Ella

Ella moved into the residential home on May 8th. For the first few weeks we weren't allowed to visit her at all and she can't come back to our house for at least six months. It sounds harsh - and as a parent to go through it, it really was hard - but there is good reasoning behind it. Ella has to accept that it is where she needs to be. The staff told me of another resident that five years later is still homesick because his mum didn't follow their advice. We did, because as we have said many times, this isn't about us, it's what's best for our baby girl.

We first saw her at the end of May, and a couple of times since. We stay near her home and go for a walk then find somewhere to eat. The only exception was Ricki and Kim's wedding, but she seemed to cope really well with it. We go on a Saturday morning/lunchtime and they've been pretty successful. She asked to come home the first couple of times but not since. And her face is beginning to light up when she gets back. She's starting to feel safe there, getting to know the carers and other residents, something which is very important to her. The last few weeks she has been quite calm. They are still having issues, but in between them the periods of calm are stretching.

We decided to have a holiday, just the two of us, (first in 18 years), to just relax and recharge, we hadn't completely recovered from the sibling placement last year before this all started with Ella. So we decided to visit Ella as it'll be a few weeks before we can see her again.

This time though it was in the evening, after tea and before bed. The carers let her know we were coming, the autism in her doesn't like surprises. She squealed when we arrived, as she always does. Played and then just started crying - I mean real sobs. Neither the carers nor us could work out what triggered it. She asked us to go home :( Of course we did as she asked, but it was awful, seeing her sobbing and not being able to console her.

Talking to her keyworker after we all agreed it was because it was the evening. She has her routine when she gets home from school and couldn't cope with it being varied. So we will ensure we never do that again, she has enough going on in her little head at the moment without us unnecessarily adding to it.

Added to her initial outburst, afterwards she was so worried that we didn't love her anymore it took the carers a lot of time to reassure her. Boy did we screw up big time. I know we weren't to know, but doesn't make us feel any better about hurting her :(

ETA We're one week into our two week holiday. And yes, we are slowly unwinding, recuperating and having fun. BUT we never really realised how big a part of our lives Ella was. The boys are all independent young men (we have 5 young men - where did those years go!) but Ella was with us 24/7 and that doesn't just go away. We have both been missing her absence continually. Maybe coming somewhere where we have so many memories with her wasn't the wisest of choices. Another lesson learned too late.

Love this girl so very much.....

Wednesday, July 05, 2017

Fostering Disruption Meeting

A Disruption Meeting is needed when foster carers give 28 days notice on their placement.

We have only done this twice. The first time was simple. The lad has been stealing from us by going into our bedroom - completely unacceptable, not only from a safeguarding point of view, but because it's the only room in the house foster children aren't allowed in, our own safe place - and looking through our things and taking money from Jeff's tin just crossed so many boundaries. Jeff couldn't move on from that. So there was no need for a Disruption Meeting, the reason was black and white.

The second time was far more complicated. In a nutshell we gave notice last August. When your dad says your husband looks ill and your daughter, with all her needs, wants to move out, well it's time to re-evaluate your placement. I won't go into specifics but suffice it to say that we've had Joe with ADHD and going off the rails. Everything with Ella. And I've been in childcare 30 years. But nothing prepared me for a set of siblings we were asked to care for. Anyhow long story short one of the siblings moved on in September 2016 and the other February 2017. We waited. And waited. Asked and waited some more. Eventually in June I wrote to someone in charge, and suddenly it's organised. Five months after the second child left and nine months after the first.

It was a relaxed meeting, but still with a Chair and someone taking notes. We voiced our unhappiness at the lack of support and it was agreed we were let down. In all honesty I don't know how much of a difference it will make going forward, but we know we wouldn't accept such challenging children again without a robust placement plan. It certainly wasn't a wasted meeting, a couple of good ideas came up that nobody, including us, had thought of at the time. We explained we were exhausted and the impact they had had on not just us but Ella and M, our other foster child. We felt we went from one crisis to another and spent most of our time putting out fires. That other foster carers were in awe that we persevered as long as we did.That even though most people knew we weren't exaggerating nothing changed.

But we're glad we had the meeting. We needed to let social services know how unhappy we were. It needed recording officially. The Chair did say they had learned a lot from our case, but apologised that it was at our expense. And everyone there unanimously said we had done an amazing job, even though we certainly didn't feel it at the time.

So that's a Disruption Meeting. Worth persuing and insisting on.


Monday, July 03, 2017

Short Term Fostering

That's the title for what we do. We have children and young people for up to 2 years while the courts and social services decide what they consider to be the best outcomes. Since the 13th March 2015 we have cared for 18 children for varying lengths of time. The shortest 2 hours - I kid you not! A lot of emergency placements for a weekend. Most tend to be around 6 months. But our longest, M, has been with us 18 months and this week is moving into a Long Term match :) So we did what we always do and said we'd take him out for a meal. He chose Cosmos, an international eat as much as you like buffet. It was the first time he had been there, I don't think it will be his last! We took everyone at home, which included Josh, who's been home for a few weeks, and all 4 fosterlings. I love this photo, all the kids are smiling - you'll have to trust me on that ;) But for me one of the biggest things is that the children get to.experience everyday stuff, and a meal out for a treat is one of them :)