Wednesday, December 27, 2017

Ella - 8 months on

In a nutshell, after the past few days, we seem to have made little to no progress.

May - The first few weeks were torture when she was behaving the same way at the home as she had been here but we couldn't see her as it was agreed it would be too confusing.

June, July, August and September - We started by short visits, taking her in her wheelchair to local cafes within walking distance. This then stretched to a lunch, and then out for a few hours. We managed getting her to Ricki's wedding, but she didn't stay too long. Taking her to Windsor to see Sam, Alex and Ruby. Staines shopping and getting her hair cut. These visits lasted between 3 and 4 hours and were successful. She would be happy to see us, but equally as excited to go back to the home.

October - We took her to a wedding. We have no idea what was triggered or how. But she threw her ipad across the table. Punched me. Grabbed my hair. And even tried to pick up a tall standing bin and throw it at me. Talking to herself like Gollum again. Was the day too long? Too much stimulation? Seeing a lot of family that she hadn't seen for 6 months? All of the above? Or none of the above and something else that we have no idea what it was. The following week we went out as we had been, she was a little on edge, but nothing specific. Until the meal came that she had chosen and then the whole lot got thrown across the restaurant. Climbed off the chair onto the floor and refused to move. Jeff eventually got her out of the restaurant and waited in the car for me. The home didn't have any spare staff so we had to get her there somehow, all the while she's hitting Jeff and trying to bite him.

After this we all agreed we had to go back to basics. Jeff visited on his own, but she would lock herself in the toilet refusing to come out. I then visited too and she was fine, as long as we promised we wouldn't stay. Ella wasn't being violent but she didn't want to see us. Although she then says she wants to come back home. She is beyond confused.

Her birthday was early December. We spoke to her on the phone the night before and she was excited. Were we bring presents? Did we remember a cake for school? And a chocolate cake for her to share with her friends at the home? However, when we got there her key-worker let us know she was calm but she didn't want us to stay. So the photo above is all we have of her birthday. But it was what she wanted and she wasn't stressing so we went with it.

We managed to get her in the car on one occasion, she wanted a MacDonalds. We were aware of her mood swings though so thought a drive-though which she could then eat in the car on the way back to the home. She was excited until we got the meal and then threw it across the car. This time we managed to keep her calm before she escalated but she was very upset and she didn't know why.

We agreed to visit Christmas Eve as we all felt Christmas Day would be sensory overload in the home and adding us to the equation could just be too much. Ella was pleased to see us, and helped Jeff pile her presents up. However as soon as she knew we were staying for a cup of tea she said she would go into the lounge and we were to stay in her room. Her marvelous key-worker managed to persuade her to come back and we had a perfect half an hour opening presents and chatting. But we made sure we left as soon as she mentioned it. That was the most successful time with Ella since September.
I have shed a lot of tears the last few months. With Jeff. With her key-worker. But mostly on my own. With all my heart I want her to be happy. Settled. Without her anxieties. But we are at the will of the NHS. The shrink won't assess her until the epilepsy centre are happy. They won't commit until she's had the MRI - which we've been waiting for since 11th September. But she hasn't had a fit since early May so surely someone could agree to do something! Yes, the home is keeping her safe, and cared for, we don't doubt that, but she needs more - she needs healing :(

Christmas Day we had a phone call in the evening, all excited about the day she had had and the presents she got.

Boxing Day morning we get a call from the home. Ella has woken up completely relapsed. Attacking everyone. Wanting to kill the staff (even though she doesn't actually know what 'kill' means). All the same bizarre, aggressive behaviour that we have all witnessed before. Could Jeff go over as they were not having any success with her. So he went, and didn't have any more luck. She locked herself in the toilet and basically refused to come out till he left. This continued all day. At 4pm we agreed a call to the doctor was in order - nobody wanted a repeat of the 29 hours non-stop we had in May. Her GP came out, and was concerned, especially as she was refusing to take her epilepsy medication. He phoned an ambulance. But when they came out they checked her over for infection, and as she had finally taken her epilepsy medication they didn't feel there was cause for a hospital admission. So Jeff and I came off the phone to the home at 11:30 in the evening, having spent all day feeling helpless and worrying, a little reassured.

Today I phone the home at 12:00pm, thinking no news is good news. Not so. I was told she had continued the behaviour. The doctor was called back out. Who called an ambulance back out. Who this time did take her to the local A&E. I did ask them next time to let us know if Ella is going to hospital as, you know, we are still her parents! I spoke to an A&E Consultant an hour ago and now just waiting to hear if another NHS department is going to do nothing, or whether she is finally going to get the help she needs.


  1. I am so sorry to hear this. This must be agonizing for you and Jeff....and for Ella too. Could it be hormonal changes? Isn't she like 13 or 14? She's definitely where she needs to be and I hope they can get a handle on what's causing her to lash out.

    1. Thanks JoJo. She's just 19! Where did those years go?? Her hormones do make her tetchy but this is off the charts. Still waiting to hear back, 3 hours now! xx

  2. Oh Suzanne this is heartbreaking. Could it be the epilepsy drugs causing the behaviours? It's just that some are used as mood stabilisers, and some people get opposite reactions (valium is like speed to me for example). I do pray she will be seen properly. Have you got an advocate? Perhaps she needs a multi disciplinary team to discuss ALL her needs. But that would be a Mammoth task to get the NHS to agree to it. I know that with Autism sometimes there is no explanation for behaviours, but i keep wondering about smells (as it's happening around food?). Anyway I'll pray for you all xxxx

    1. Thanks Shirley xx The home have referred her for an urgent mental health assessment. We have said for years that we have felt that there is something inside her that trips a switch but we've always been fobbed off that it is behaviour. But the care home manager, having now witnessed the last couple of days, agrees with us so maybe having her fighting with us will make all the difference xx

  3. Suzanne, how heartbreaking for you all. Hopefully the different medical services will start to communicate, but it's unlikely unless you have someone inside fighting your cause. Emily was by the secretary at our surgery once she realised how the gp had let her down. Love to you all x x


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