Thursday, June 22, 2017

Annus Horribilis - Ella

I truly do not know where to start.

Firstly, if you're a new visitor, have a wander over to this post, gives you a bit of background to our Ella.

Ella has always had an aggressive streak. Two or three times a year she will lose the plot, complete meltdown for a few days. And then everything reverts to normal. She's always incredibly emotional and feels bad afterwards. But at some point will do it again. This was doable, although frustrating and physically and emotionally demanding.

However last October everything changed. She started to get the shakes so we thought she needed a higher dose of Epilum (for her epilepsy) as it had been the same for years. The Consultant disagreed and said it was tremors caused by the Epilum and he recommended changing her medication. Oh how I wish we had never listened to him. But there you go. So we start an 8 week regime of weaning off of the Epilum and onto a new drug called Keppra. Not much changed initially, but once it was solely Keppra in her system it was as if a monster lived inside of Ella. She would have bouts of hysterical laughter during which time absolutely anything that could be thrown would be. Usually at me but sometimes just anywhere. Obviously there were casualties, including the new TV we had bought only 6 weeks earlier. She was waking at around 1am and then staying awake. Sometimes she would play quietly, other times she would throw things. So I got into the habit of as soon as she woke up we went downstairs, found her tablet and put the TV on. That usually helped. When it didn't I would have to just leave her in the front room and take myself to the kitchen. A lot of tea was drunk during the first 5 months of 2017. A lot of computer games were played. And not a lot of sleep for either of us, around 2-3 hours most nights.

After 2 solid weeks of this behaviour I shouted out on facebook to some friends. Three separate people all said "Keppra rage!" One daughter had behaved as Ella, another whose child is non verbal said the anger in her eyes was terrifying. It didn't take much research to find that 10% of people with special needs cannot tolerate Keppra! Oh. My. God. Why were we not warned?

We then started her on a new 8 week regime weaning her off the Keppra and introducing another, Lamictel, which apparently is also used for Bipolar, so we had waited expectantly for the old Ella to rear her head.

During this time I also went to the GP begging for help, remember that disastrous appointment?
We also contacted her transition social worker who started the ball rolling with seeing what support was available. We were offered 3 hours a week during the term and 6 during the holidays. And yes, that's great, but it didn't resolve the fact that night after night after night it was relentless. Sadly we were still waiting for that support to kick in come the end of April. Her name was also put down to see a psychiatrist who specialises in special needs and a behavioural specialist. We were also still waiting for those at the end of April. I don't blame anyone, there's simply not enough money to go round. Didn't help us though.

We had a few weeks at the beginning of February when Ella went quiet. And then bang! It was like the previous behaviour on steroids. And her behaviour wasn't just aimed at me any more, she started attacking her dad as well. For the next few months we would be woken at 1am, and the same groundhog day would happen again and again.

We took her to A & E one morning when we honestly did not know what to do with her. Chocolate and teapot spring to mind. They passed us to a mental health nurse, who admitted she hadn't dealt with anyone with special needs, and really didn't have a clue. We walked away with some sleeping tablets and no follow up. Those sleeping tablets did not even touch her.

She had a major fit at the beginning of May which ended up in an overnight stay in hospital. Given something that completely knocked her out, and yet she still woke up at 5am and went straight for me - in front of all the nurses!

Strangely, she never kicked off in front of the foster children, it was always in the night, when we were alone, or at school. Her behaviour had deteriorated at school, she was spending hours just lying on the floor refusing to move. Not getting off the school bus, not getting back on it to come home. Being silly with her food and drinks. And other stuff.

And then, if it's possible, she got worse. Started soiling herself and refusing to be changed, which we had never had a problem with. Refusing to go to school. And you know, it's one thing dealing with difficult behaviour, but when you are trying to reason with an 18 year old with complex special needs it's so much harder. As for moving her, don't even go there.

Jeff and I were exhausted. Human bodies are not designed to survive month after month on so little sleep, and being attacked by someone you love with all your heart.  No matter how calm you are, eventually something will break permanently, and we really didn't want that to happen. We were also worried that one day she could actually break one of our bones. Not intentionally, she would never mean to, but in her persistent agitated state she might.

Eventually we had a meeting with the school SEN man, her teacher, her HLT that has known her for years, her social worker, someone from the SEN Dept for our LA, and a lady from a care home. We talked about Ella, her needs being so great now that school are asking for extra funding. Her HLT saying that the behaviour Ella is presenting with is similar to how she was in the first years at Manor Green. Her anxieties are through the roof. There was concern about whether she has additional needs, like Schizophrenia or Bipolar. But the overriding agreement was stopping the Epilum had destabilised her to the point she is not in control. I admit to crying through most of this meeting. We have given our heart and soul to this little girl, who is suffering more than we can imagine, but we can't get through to her.

The outcome of the meeting was that Ella would move into a residential care home on Monday, May 8th. We all set about preparing her, saying that all her big brothers moved out when they grew up and now it was her turn. The manager from the care home visited Ella a couple of times, and school and the home started on story books to help her process. We took her shopping and she chose photo frames, some hooks, bunting and a ton of fairy lights to go round the walls (thought it would remind her of our garden). The day was set, she would go to school as normal on her bus, have a chance to say goodbye to the driver and escort. During the day we would go over and decorate her room. And then she would get the new transport home.......

Best laid plans ...........

On the 7th at 1am she woke up as usual, and the onslaught continued until 7am when it stopped as easily as it started. Oh, by now, Ella is in a wheelchair as she has a fear of falling. We had planned a special treat, and combined N's first birthday party with a party for Ella. We invited just those people that had been influential in Ella's lives - Mum, Dad and Sandra; Anna; Joy; Lynn, Don and Amy, and a few others that couldn't make it.Ella's behaviour was very up and down during the day, which was hardly surprising as she knew what was happening the next morning. But when everyone arrived she was in such a happy place and the party went well. At 8pm I put Ella to bed and she said she was going to be good, no sillies tonight...........

At 9pm she called Jeff, and we just knew by the tone in her voice. He went in and she clouted him round the face. As our routine we took her downstairs before she had time to kick off and disturb the offers. She was relentless. Throwing, kicking, maniacal laughing, attacking us again and again. Not loud though, spoke to the 2 older fosterlings in the morning, and they slept through everything!

At 11.45 she had now been awake 23 hours. I phoned the Out of Hours doctor. We had one sleeping tablet left so I wanted to know if I could give it to her. He said no, but if she continued to attack us to phone 999. At about 12.15 I did that. I explained it wasn't an emergency emergency but ......... After about 20 mins a policewoman and a mental health nurse turned up. As an aside, it's a new thing and how cool is that? Instead of 2 police and then having to phone for more support, it arrives straight away. So I went in the kitchen with the police woman, the MH Nurse talked to Ella and Jeff went upstairs as he was beyond stressed. The policewoman though insisted on seeing him to make sure he didn't have any injuries, other than a few scratches and bruises. Ella calmed with the nurse, but the minute he left the room to make a call she went for me. To the point that the policewoman had to sit on Ella and call for back up! Yes, as mentioned earlier, she is flaming strong. When they arrived she was put in handcuffs. My baby with complex needs was handcuffed for ours and her safety. One of the policeman had been out before with a fosterling and said she didn't seem like the same child. She then started saying she wanted to kill us. The police rightly said they didn't want to take her to the cells as it wasn't a normal case of assault and we completely agreed. The MH Nurse disappeared again to take another call. The police took her cuffs off and for someone who wasn't walking, she threw herself across the room at me. MH returned and was like, what the hell, who took her cuffs off? They tried to get her into the home, but they said they couldn't accept her in the middle of the night without the manager's approval. So they tried for an ambulance. Apparently sometimes they won't come out for mental health cases. But Ella had now been awake 26 hours so they were also worried about her physical health. She left here at 3am with one of the policemen for support, she didn't want Jeff or me with her. She finally fell asleep - on a mattress on the floor - in A & E at 6am - 29 hours without sleep! Then woke up at 8.30am.

We arrived at the hospital and could hear her kicking off. She was fine with some nurses, others not so much. We went into a relatives room, we all agreed not seeing her was best. A rep from the care home came, followed by the manager and assistant manager. The rep explained to the doctor that they couldn't force her to come with them and that if that happened then Ella would have to be kept under some Section or other. However when the manager went in and said hello Ella, she was fine and happily agreed to go with them.

We were then advised not to see her for a while as she needed time to adjust to her new surroundings. After the way she left, not seeing her was heartbreaking. Every moment I worried. I still didn't sleep. We would get daily updates from the school and home, which were good some days, appalling others. She broke furniture. Sat in her own poo for up to 5 hours. Cried. Wanted to come home. Heartbreaking. Jeff and I went to our Goddaughters First Holy Communion. We have never attended one of these events without Ella being present. I couldn't bring myself to stay, I was missing her so much. Even writing this makes me cry for my baby.

I have been through so much in my life, but this was absolutely one of the worst - probably second after nearly losing Joseph when he was 5 weeks old. But much as we miss her so, so much, it's not about us, it's about healing Ella so she can go back to being funny and cheeky and very, very occasionally out of order.


  1. Oh my god Suzanne. I knew things were bad but I didn't realize just how bad. So she's still in the residential place and not home? I'm so sorry.

    1. Virtually no-one knew JoJo, just my mum, dad and step-mum. I mean how do you even start a conversation like that? I would have been a continuous blubbering mess! This seemed the most direct way to tell everyone at once and save Jeff and me having to explain so many times/ Yes, she's still there. We had a 6 week review and it was all agreed that she needs to stay. We have another review in August so will see what happens then xx


Love to hear from you. Please leave your thoughts below. Suzanne xx