Saturday, 25 January 2014

Unto us a child was born

Our bundle of joy was born at 2.30 in the morning on 30th April 2004. She was delivered, pre planned at home but sadly rushed to special care later that day due to excess fluid in her stomach causing her to vomit and choke. Once she came back home, we discovered how much a 2 day old baby could cry! She screamed whenever she was awake, unless we were in the car or at a play group, at which point she would just sit and watch the world go by. I first mentioned her consistant crying to my health visitor at 4 weeks old.  By her 8 week check up,  I was asked if she smiled, I said again, no she just cries. With that my screaming baby, looked at the GP and made an effort with her first smile. This was the way we were headed. She would be awful for me, yet appear the perfect baby/child elsewhere.
She hated playgroups. Cried at me that they were too noisy and she wanted to go home. We used to leave early often because she wasnt coping. By then, I was telling people I thought she had autism. 
So then she started nursery, things did not go well, she would cling onto me, screaming and crying, trying to drag me back home. When I was at home, not a minutes peace, not a normal 3 year old, but an ultra demanding one who obviously isn't following the 'plan' I had in mind.
I had to fight her off to leave her anywhere, normally she was OK when I had gone, but at nursery she never fitted in, never played or interacted with other children, apart from the occasional once or twice. I couldn't even leave her with her dad without her kicking off. (We are married and live together, so it wasn't as if she didn't know him!). She would go crazy, chase me up the road if he didn't have a tight enough grip on her. It was awful, I felt awful! I had never given in to her, or gone running back. I had always left when I said I would, and I always returned when I said too. So, what was I doing wrong???
I spoke to the nursery (the supervisor happened to be a friend, which really helped!) She said that we had reached a point where she didn't think they were helping, and it was time to move things on. Reality set in about now. My gorgeous daughter wasn't 'normal'.
So, what now??
Health visitor was my first point of call. I liked her, which helped! She visited me on my own. Then my daughter at nursery. Her third appointment was to see both of us, at home together. My daughter really showed my HV why I was concerned!!! She threw an amazing tantrum, because she demanded a drink and I refused to get her one until she asked me with a 'please'. I remember my HV writing down...'Demanding of mum +++++'. I guessed that wasn't normal!!! We got our referral!
We were referred to the Action for Children centre. They were great, they had my daughter for observation for one day a week for a few weeks. And she was seen by a specialist GP and a psychologist. Eventually, they arranged a meeting with me to discuss the outcome. Basically, the outcome was that she has a lot of autistic traits, but not enough to be 'labelled'. So, sadly, no further help.
When she started school, I tried to get help. They kept insisting her behaviour was normal and there was nothing to worry about. That was despite them having to drag her off me every day. Reception, year 1, year 2...and eventually, during the Easter holidays in year 2 (just before her Stats and her 7th birthday) Things kicked off again. She developed a phobia of choking. She refused food. Totally! Barely ate a thing. She lived on soup, and sieved yoghurt. For 2 weeks I ignored it, thinking it would stop. She even refused to eat her own birthday cake. She had chosen it, but said she would choke if she ate it. So she spent her birthday watching all her friends eat whilst she had nothing. I ignored over the holiday, thinking it was a phrase and it would pass quickly, but it didn't. I took her to A&E after the bank holiday and insisted she saw an ENT specialist. (Just to confirm there was nothing physical wrong!) Then, I went to the school and had meeting with the head. She called the school nurse and insisted she referred me immediately to CAMHS (Children's mental health). These people really can move quickly when they need to! I had a telephone appointment within 3 days. The Dr advised me on how to handle things for now, and that they would get me an urgent appointment. That appointment was 5 weeks. In the mean time, I was told if she lost 2 more pounds, she would need to be hospitalised and drip fed. I called my GP who perscribed liquid meals, and made a further referral to Berkshire Anxiety Clinic.
My appointment with CAMHS arrived, and at the initial meeting, the nurse agreed my daughter showed some atuistic traits but was not showing enough signs to assess. So, I was told I was doing everything right, and as as my daughter was starting to eat a little better, the nurse discharged me immediately. I wasn't too happy.
I felt like I was desperate for help, and yet again, I was being told there was nothing anyone could do.  
A couple of months later, I got a letter from Berkshire Children's Anxiety Clinic (BCAC) asking me to attend an appointment to asses my daughter. She was assessed, and after a long wait, we were finally given a diagnosis. Not on the autistic scale as I had expected, however, she was diagnosed with a list of things, Social Phobia being a big one, fear of choking, separation anxiety and sensitivity to particular sensory stimuli (Noise sensitive) along with several 'generalised anxieties' as they are called. Reading the report was horrid, I knew it all, but to see it all in writing hit home hard!
Still, we thought it was good news. We thought that, finally (after 4 years of pushing) had a diagnosis, and more than that, the clinic could offer help. We saw the psycologists for over a year, and during that time, my daugher had her own psychologist. I have done a course with them on overcoming phobias and my daughter is did the same course based at her level.
We did see improvements in our daughter, you wouldn't know its the same child. She put on almost 2 stone on in the year since she was ill and although she still had occasional bad days, she began to eat like there was no tomorrow!
She had started working with her fears and was trying to understand the only way to overcome them is to face them head on, step by step. She can put her own improvement program together, and order it so she knows where she is going. For a while, I did very little but agree her rewards!
Over the next couple of years, we had more issues with her behaviour, she suffered severe tantrums, and they became more violent (mainly towards me) and she started trying to self harm. In June 2013, we contacted the family support worker at the school and had a meeting asking what we were doing wrong. She agreed we had been doing everything right for our daughter, and that she wanted to make a new referral for an assessment.
In the August, the eating issue re-appeared, but because I was better equipt to manage it, she only lost a couple of pounds, However, we realised quickly that the food refusal was due to general anxiety in opposed to a fear of choking. She stopped eating because she was scared about going back to school with a new teacher into year 5.
By then end of September, she was still refusing solid food, was having much more severe violent meltdowns and was attempting to refuse school. Badly. She would hide in wardrobes and I would have to search the house for her. She would attack me at the car, and it was becoming so severe that I had to half carry, half drag her into school from the car park. Luckily, the school were being supportive, they would meet me and take her off me. They even had to stop her attacking me on one or two occasions.
We had meetings with the school, we had our new CAMHS referral underway. They finally agreed to assess for Autism, but it was a wait of upto 6 months for the appointment. My daughter said it was her unahppiness with her new teacher making her so bad. I have no idea if that was the case, or if she just wasnt coping. I suspect both. Partly that she doesnt feel she has 'bonded' as you would expect with her teacher. Partly I feel she is just very stressed and begining to find fitting in hard due to her poor social skills and partly I think she is struggling to keep up accademically and is worrying she will be moved down a group and look 'stupid' to her friends.
I have been offered help from behaviour support. The first lady was lovely and happy to be 'supportive' but the second lady who came was not! I am disgusted that people who are there to support can actually do so much damage. I am currently fighting with the NHS to get a decent diagnosis for my daughter, and on top of that, I am now fighting a complaint about this woman. In my opinion, she should not be visiting families who are having difficulties. She attempted to blame all my daughters issues on me and basically said I had failed as a mother. She also told me the school had told her they were sending social services to me. However, that was not true. The school were totally supporting me were trying to get me some help. The damage she could have done is unbelievable. She could have destroyed the trust I have with the school. She could have destroyed my confidence in myself and if she was presenting this to someone who was at a total loss and not a strong person who knows how it could have affected them. I want to make sure that doesnt happen.
I sought some professional advice about social services and I now have a behaviour analyst acting as an advocate on my behalf. Should anyone mention any concerns again, I will be forwarding directly to her. I shouldnt have to do that. I am lucky I have found someone who can help.
I have also started looking into a private diagnosis. I am not happy with the NHS and I believe they have let my daughter and us as a family down.
And thats the end. For now. Its a very brief summery of the last 9.5 years with our daughter. It also focuses on all the negatives. But lets be honest, if I told everyone how lovely, kind, and thoughtful she can be. How generous, how good at sharing, how loving and funny. No body would beleive she could be the Jeckyll and Hyde I have described!
So the blog begins. For people who are fighting the system, and fighting for their children. Dont give up. The fight must go on. For our children. :-) 

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