Ok so I have lost the heart to blog recently. Life has been too complicated.
Firstly, I have been told there are some in accurate details in my post regarding the triad of impairments, which I will look into although I am going to give the technical explanations a wide birth for a while! and secondly I have had so much going on with the allegations of child abuse that were raised to me on Friday evening.
I am a registered child minder and I totally support any child abuse investigation, including that of my own daughter. But what really upsets me is that whilst social services are investigating allegations like my own, which have been made up as a revenge attack from some so called 'professional' who isn't even prepared to give her name, a 3 year old boy dies at the hands of his mother. I do wonder how my accuser would be feeling if that boy had died in our town as a direct result of her wasting social services time and recourses.
I hate waiting. Really hate waiting and I have to wait.
Meanwhile, Duck had a terrible meltdown on Sunday over a cup of tea. Cutting a long story short, she had been shouting at me about this cup of tea for 20 minutes. It was in a lidded cup, but when we got to church she almost threw it at me, saying she didn't want it. I was not prepared to get into a shoving hot tea back and forth, so I whipped the lid off and tipped in the nearest bush as fast as I could. Duck was not happy. In fact, she flipped. Totally. We ended up in the entrance porch to our church with her having a huge violent hour, hitting, kicking and screaming and shouting for over and hour. Needless to say I was not flavour of the month. Any of our church who missed her previous meltdown a few weeks ago, certainly caught this one. We had to shut all the doors between the porch and the church to drown out the noise. We almost always have meltdowns on a Sunday. Its not because Duck doesn't like church, or Sundays. Its because the day after Sunday is Monday. Duck doesn't like Mondays. Duck despises Mondays. She relaxes a little on a Saturday, but by Sunday, she is anxious that school is looming. Poor kid. She is anxious all week, and then when she has a weekend off, she spends half of that anxious about Monday. I get anxious occasionally, everybody does. But I cannot imagine how hard life must be when you get this kind of anxious almost every day.
Monday drop off wasn't too bad. I was grateful because I was distracted and needed to make those calls. But by Tuesday morning, Duck had decided she didn't want to go to school. And she meant it. I had another one of those mornings where I had to play hide and seek at school run times. I found her under her bed crying. I coaxed her out and down the stairs, into her coat, into her shoes and into the car where I strapped her safely in. The other end she was awful. She (as normal) locked her car door so I couldn't open it. I used the key to open the windows so I could reach in. As I did so, a teacher appeared to help, but sadly this just sent Duck into a panic. She shot across the car and out of the drivers door window and started to run away. I made light to her about how she managed to escape and questioned if she could get back in the car the same way, which was just enough to make her stop and turn around. She ran back to me and clung onto my arm screaming not to leave her. Teacher came to chat, and we coaxed/marched her to the entrance of the school. Another teacher appeared and I whipped my arm away and shot out to the car. I saw a third teacher running towards her and all 3 of them trying to calm her and stop her escaping from the school. As I drove away, all I could hear was screams of 'I want my mummy'. :-(. Duck was going in quite well for the SENCO until recently. She likes the SENCO, and is usually cooperative for her. But I have noticed recently, she has had more bad days. Knowing what I do about PDA, I think its safe to jump to the conclusion that she needs a different plan. Something new, to catch her off guard. As for what that may be, I have no idea. That's something I will be discussing with the school when I go to the meeting. Its a big meeting this time. We have 3 different behaviour support workers there. Then we have the head, SENCO, teacher, Social Services and myself. I cant wait. :-)
Wednesday drop off was as awful as ever. Duck had a terrible time in the morning getting ready. She was crying as I led her to the door and put her coat and shoes on. We got to school but she was still really upset and complaining she didn't want to go. When we got there she wasn't too bad, but did cling on to me screaming and trying to chase me out of the office. I could see and hear teachers struggling with her. I have no idea how long it took to get her through. I have to drive off as quickly as I can to stop her attempting to follow me.
Meanwhile I went to my GP for a prescription. She had a chat with me about the allegations and she has also previously looked into PDA for me. She told me that we have done everything we can for Duck, we have attended all meetings, referrals and appointments for her. We have argued with children's mental health services, we have called in an autistic support worker, we have called in a behaviour analyst privately to support us. We have also followed all advice given to us, we have involved our MP to get the referrals Duck needs. We have kept our GP up to date with all of Ducks progress and she is backing us 100% on all the allegations. I commented how Duck could be so 'normal' one minute and then so aggressive the next. She pointed out that this and all Ducks anxiety and behaviours linked really well to PDA. She also pointed out that poor parenting is often the first problem raised as PDA is not understood. I knew all of that. But it was good to hear it from a GP. She really had looked into it for me and I needed to know it.
Thursdays meeting was hard, nobody seems to know what to do to help Duck with her separation, her eating or her toileting issues. It seems I managed to clear up a few points but basically, we have to sit and wait for the referrals that CAMHS have made. Ducks ADOS is in a couple of weeks, for what that is worth. So hopefully things will move soon.
Behaviour support wanted to observe Ducks separation so she was in school Friday morning to see how it went. I didn't tell Duck she was being watched, and there was no way would she have noticed. But from half an hour before we left the house, Duck was really happy and keen to go to school. Typically, she went in the best she had done all term and needed no support of any kind from teachers. She even gave me a grin as she walked in and said 'Bye bye mummy'. Then Senco and I are left banging our heads against a wall....Still, there is always Monday.
Duck was lovely all evening Friday, although it did take me a while to settle her into bed. Saturday she was happy and eating (well drinking) lots, she said she was hungry. I still cant get her to try any real food. It doesn't seem to matter what rewards I offer, or how hard I try, she just panics that she will choke. I am hoping Occupational Therapy appointment will hurry up. She really needs the help here. I have been trained to deal with her anxieties, and the tools for that I still use. But they just don't work anymore. I need more specialist help. Someone who understands the sensory issues around food rather than the anxiety issues. They are different problems. I am trying to treat anxiety. Duck is sensory. I am not achieving anything worth mentioning. Perhaps if I had been listened to when Duck was assessed at 3.5 years old, or again at 7 years old we would not be here now. Its frustrating that I have said for so long there are problems, and I have had several people agree there are a few autistic traits, but nobody has believed me enough to investigate properly. Now here we are with a child who is obviously struggling, she is struggling to maintain academically, struggling with friendships, struggling to grow up and struggling with severe anxieties. And people are worried. I too am worried about Ducks mental wellbeing.
I went out Saturday night with friends. I really needed a break from everything. I had told Duck I was going, and she was totally happy. I had a lovely kiss and goodbye with no moaning. She even went to bed well for daddy.
We are off swimming today. Both kids love Coral Reef water world and we have not been for ages, so I decided its time to go. Son loves it there and is a really competent swimmer, although he does have a very nervous mum when he heads off into the rapids way ahead of me as I have to support Duck. Duck loves going, but she gets anxious around water. We spent 3 years on her lessons for swimming and she finally completed 15 metres. She just panics. It also gets very noisy so she gets anxious over that too. But she still loves going. So we head there first thing, hoping to be in and out by the time it gets too busy. Son will be on the fastest flume, Duck and I will be on the family slide. Son will spend most of his time under the water (much to my terror), Duck and I will be floating on top. This is what weekends are made for.
For anyone who does not know, we think Duck has a type of autism called Pathological Demand Aviodance (PDA). Its not well recognised within the NHS despite being recognised in the UK for over 30 years. I have started a petition to get PDA recognised. Please sign and share. You can find the link HERE