Saturday, 25 January 2014

Happy New Year

Happy New Year to you all.
Daughter had a good time at her friends yesterday. They kept both kids until 330 so we had 4.5 hours break 😁.  Sadly though, I wasnt feeling great and decided to spend most of it in bed. I didn't feel much better for it but it was nice to be able to relax.  
Our GP gave me some prescription drinks for daughter and I am glad I called. Daughter has lost even more weight and is beginning to look starved. I can only hope these drinks help because if she doesn't eat more soon she will soon be in hospital. 😬
We went to friends for new year eve, daughter took ear defenders, sleeping bag and tablet to play on.  Daughter didn't feel like being social, she went up to the bedroom and spent most of the evening playing on her tablet. She came down hungry but wouldn't eat any of the food on offer. Thankfully, I took a prescription drink with me so she was able to have that and a bowl of ice cream. Not very healthy, but enough to give her some much needed calories. She went back upstairs and didn't appear again until around 11. Daughter sat on the sofa by me and fell asleep, which is where she stayed until we left at 12.30.  On the bright side, she was well behaved. No meltdowns and she had a good lie in the next morning.

I still cant stop thinking about the poor support we have had from the NHS services including a diagnosis of separation anxiety which we now know to be completely wrong. The system for childrens mental health (and probably adults, but I have not needed that yet) is poor throughout the UK. The knowledge of the 'specialists' is poor. They have to cover such a vast amount of conditions that they tend to be 'Jack of all trades, but master of none'. There is no one in our local CAMHS who can identify PDA, most of them have never even heard of it. They are not trained to pick up the very subtle signs of autism in children. (Subtle signs of autism does not mean mild autism, infact, its quite common, mostly in girls, for the autism to be so subtle, that its really well hidden and very hard to pick up. Some children present differently, and as with PDA, they learn to cope at school and in social groups by copying other childrens behaviour. This masks the underlying cause.) These children can be severely autistic, yet hide it from people who really don't scrape past the surface.

It takes someone with real autistic knowledge to really see whats going on. It needs someone who understands and can scrape past the surface to identify the real issue and stop blaming other, more common conditions. ODD (Obsessive defiance disorder) is often used as a misdiagnosis for PDA, a lot of the symptoms are the same. However, the big difference is that the defiance of PDA is caused by anxiety where as the defiance with ODD is just caused by defiance. The other common misdiagnosis is SD separation disorder (or AD attachment disorder) Both are often used to describe PDA children as they do not like school and separate badly in situations where they feel they will get a lot of demands that they cannot cope with. Daughter separates badly at school but everywhere else she is fine. So SD/AD has already been wiped out because with either of those conditions, a child will not separate well under almost any circumstance. SD/AD is said to be caused by poor parenting issues around the child when its a perhaps a child who was neglected by parents, or passes from pillar to post, in and out of care and generally not looked after. I dont know if this cause is for all SA/AD children, but I do know that's not the cause of our daughters condition.
New Years Day was a very quiet day. I left the children with husband and walked the dogs. I love walking the dogs, its my time out, a bit of peace. Even in the rain.

Then I took daughter to Tesco. She is still not eating, and the one milkshake the GP prescribed really isn't enough. So we went shopping. I told her to look around and chose any foods she would eat. I have chocolate at home which she eats so the only rule was no chocolate but I didn't rule out chocolate pancakes or any foods with chocolate in them. The last time she stopped eating solids, she did eat a few liquid baby foods, mainly the 4 months really smooth stuff. So I knew we were headed there. I only gave the leftovers away a few weeks ago, was kicking myself at this thought now. However, focus on the here and now. Here is what we came home with...Jelly, 12 jars of baby food (6 meals and 6 puddings), innocent smoothies, youghurt, juice and some chocolate pancakes. Not exactly a healthy diet, but right now I just want to put weight on her. Plus she has her prescription drink which I will give her as an end of day 'snack'. Hopefully that will be enough until I can get her eating real food again. She reluctantly ate some bits, but was saying she didn't feel well. Once she had eaten a few bits, she perked up. She wasn't feeling well because she was hungry. She picked throughout the day. If that's what it takes, then I am happy to let her. I just want to see her looking a bit healthier.

Both children were tired today, and spent most of the day lazing around watching TV or playing on their tablets. It was bliss! Daughter was contented nibbling food and chilling out. So we enjoyed the peace. By 5 though they were both wide awake and ready to play.

The only job we asked of them today was to put their clothes away. This is a huge issue for daughter, she just cant cope with doing certain tasks. She refused to bring some hangers down when her dad asked and lounged around in the lounge saying she wasn't going to cooperate. We got the hangers ourselves, that wasn't worth the meltdown. Then I said to husband (in daughters earshot) ' She isn't in the mood to cooperate with her clothes, I will just put them in a box and they can stay here until she is ready.' So, neither of us asked her to help again. She got a little cross because the box I was putting her clothes in was dirty and I hadn't washed it. Never mind, I told her. But she removed her clothes as quickly as I put them in. I just said nothing, other than to my husband I said ' I will just put them back in the box when she has gone to bed'. Amazingly enough, it wasn't long before her clothes were taken upstairs and away in the right drawers. If only it was always that easy....

I really have to sort out a 'name' for daughter during my blogging. I really cant keep referring to 'she, her or daughter' forever more. I have heard of people refer to their children as 'Dinky' or 'Bean'. Both names I quite like, but don't want to copy. Feel free to comment with suggestions below. :-)

For anyone who doesn't know, I believe our daughter has PDA type autism. Its not recognised nationally within the NHS and I, along with a group of PDA people are petitioning to get this changed.
Please support us by signing and sharing the petition. We need a vast amount of support from friends and family. Here is the link...
Thank you for taking the time to read my blog. If you like what you see, please feel free to share it. PDA needs all the help it can get. There are many families out there who are dealing with PDA in everyday life. The sad thing is they don't know it because nobody has told them or they have been mis-diagnosed. The more people who hear about PDA, the more people we can help.

I hope 2014 brings you all Gods blessings in abundance. x

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