Saturday, 25 January 2014

When first day isnt the worst day

Despite being a good day, Duck was sad as the evening progressed. In her mind 'first day is the worst day' when it comes to school. But if the first day went ok, then the second day must be the worst. I managed to get her to eat, well, drink a reasonable amount considering I only had from 3 till 8.30. Duck even asked for her 'coke' which was her way of asking for medicine without actually saying the words. When it came to bed time, we had the usual PDA type issues. She couldn't move, legs won't work, too cold, too comfortable to get up, too tired to walk up the stairs the list of avoidances can go on for hours. Its not to be difficult, its because Duck cannot cope with the anxiety of the demand to go to bed. Even more so, the anxiety of school tomorrow is playing on her mind. Duck did come upstairs, when I told her the puppy was in her bed...thankfully the puppy was nowhere near her room but reverting to these kind of tactics usually ensures Duck complies without a meltdown. Duck made it to her room and flopped on the floor. She 'couldn't' get up' or get changed. Nor could she do anything to help herself. The emotional exhaustion had taken its toll and once again I found myself undressing Duck and putting her pyjamas on her. Just like getting an uncooperative 2 year old ready for bed. Duck asked to watch a 10 minute clip on her tablet. I agreed provided she was in her bed, surprising, she agreed and even turned it off after 10 minutes, although she asked for sleep music. She chose nursery rhymes to listen too. She asked me to sleep in her room. Again, I said no, it was too cold and uncomfortable. I said I would stay until she was asleep. It didn't take long.  Duck was asleep not long after 9 for the first time in weeks.
For anyone who wonders why I call our daughter Duck, follow this link.
For anyone who already knows, don't do it again!!!! There are 3 sequels to the duck song. Feel free to have a good look, although the fourth is adult only. Ha ha...have I got everyone singing???
Living with daughter is like living with that Duck. Living with a child with any form of mental health issue is hard. We are dealing with an undiagnosed invisible illness. Duck is amazing. She has a great talent for singing, she can be totally 'normal' and a truly amazing, funny, loving child. But she is also a Dr Jeckyl and Mr Hyde. Life can be like treading on eggshells, you never know when or why she will explode. Other than school, that's totally predictable now.
I have to wake Duck up at 6.30 every morning. Not because I need or want her up that early, but because she insists on going to the toilet first thing. She has said for years she leaks wee after going to the toilet and wants to make sure she has finished leaking before we go to school. So 6.30 it is. We have checked out with the GP about the leaking. She has had urine tests, kidney scans. There is nothing wrong with Duck. She just has a few HUGE sensory issues, this is one. Duck then will not use the toilets at school and will wait until 3.45 to use the toilet at home. This is for 3 reasons. One being the leaking wee part, two being the 'ghosts' in the toilets that one child told her about in reception and she has never forgotten and thirdly because she hates locking herself in.  She has asked a friend to hold the door for her when she has been really desperate in the past. Sadly, it was the wrong person to ask, she was a spoilt girl with a nasty streak who waited till lots of other kids came into the toilet and pushed Ducks door open so they could all see. She was only in year 2. Can you imagine the horror to a very private child? Never mind a child who could well be autistic. She has never forgiven that child she reminds me of it every time I suggest using the toilets. She only trusts one child to hold the door for her, and they are in separate classes now so its hard.   I can remember well the day she came home from school and had a massive meltdown because of the child opening the door. She really didn't understand why her 'friend' would do such a thing. She was HUGELY embarrassed about other girls seeing even just her knickers, never mind anything else. Duck has used the toilet once this term. Apparently she was going to burst so she braved it and asked her teacher at 3pm if she could go. Thankfully, her teacher knew about the refusal and realised she must be pretty desperate to go if she actually asked, so she let her go. Duck wouldnt have coped if she had been told 'No, wait till the bell goes'. Currently, being privacy is a huge issue for Duck. Even around daddy or brother. Nobody is allowed to see her knickers, except me and she will totally panic if her trousers slip and someone may have seen them. She goes through obsessions like this and with school doing a talk on personal hygiene and private parts, Duck has taken it all to heart, and all to the extreme. Its not uncommon behaviour in a child with mental health issues such as autism. Indeed,  whilst I paused for a bit midst writing this post I found this on an autistic facebook page. ''anyone got any ideas on how to get k to show dr his bits, i have found a lump in his groin/ pelivic area, but last time dr wanted to look as he was soar he ended up trashing his office, help!!!''. There are many other comments around how children cannot cope with the anxiety of visits to the Dr, dentist or any other similar place.

Our dentist can only get Duck to open her mouth so he can see her teeth. Even then its very brief viewing. However, we see each time as a positive step. He is very patient and only looks, he tells her in advance that he wont do anything, and he sticks to his word.  People with that amount of understanding is a huge benefit.  We hope that slowly Duck will build up a trust with him so he can really look at her teeth one day without a meltdown. I just hope he doesn't leave the branch to move on.

School time this morning was much the same as yesterday, only Duck used different excuses. Today it was she doesn't want to do PE, because its football and she hates football, and she doesn't have the energy because she cant eat. She cant have her milkshakes either at school because she cant drink in front of anyone. She cant go in because her brother goes there and right now she hates her brother. She got angry with her brother this morning. So she ran at him ready to punch. He is a bit bigger and stronger, so he just put his foot out in front of him from where he was sitting on the sofa. Obviously that caused her to impact her tummy on his foot. Now she cant go to school because he 'kicked her in the tummy' and now her tummy hurts, her throat hurts, she must have tonsillitis and she cant walk. Oh my, the list really is endless. I cajoled her into the porch and put her coat on her amidst sobbing about just about everything. Then I put her shoes on for her and led her crying to the car. I had to put her seat belt on her and make sure her bag was in too, she was beyond the ability of thinking for herself.  Our arrival at school was much as normal. Senco appeared as if by magic and I whipped my arm away and bunked out the door. Today we had managed to get there a little earlier, so there were no parents standing there watching the scene. Other parents make it harder, firstly because they are in my way when I am trying to escape, secondly they hinder senco trying to stop Duck following me and thirdly...well..the looks. The disgusted looks of how badly behaved my daughter is, and how their child would never behave in such a way. Some times its looks from people who know and try to understand. But the others are really not helpful.
And then there are almost 7 hours break for me from my little Duck. As much as I love her, I also love my time off. :-) School is the only real break I get from her. I am lucky that Ducks daddy and I are married, it does mean I can go out for a while some evenings, and I can get short breaks. There are many who have children with special needs of some form who don't have that and never get a break other than school. Wow that must be harder than hard. It takes endless amounts of patience in looking after a child with special needs of any form. I often dissappear when husband gets home,  just for time out for myself.  I nip to the shops or walk the dogs. Occasionally I visit a friend.  I am lucky I have friends who understand too. I get plenty of time to get my thoughts together and alleviate the frustration.  I wouldn't have survived this long without my friends.  
Support is vital. Support from all around,  school,  family,  friends.  Even more so recently,  the support from a couple of Facebook pages has been invaluable is gaining more understanding of Duck and why she behaves as she does. Understanding her means I can be more patient, I can pre-empt things and I can word things differently so she doesn't feel the pressure and more importantly I no longer feel alone. There are hundreds of us out there fighting for PDA. Children, adults and teenagers.  Be warned, we are no longer fighting quietly or alone.  We are fighting together,  united as an army. The PDA army.  And we are winning.  people are hearing us, people are starting to listen.  PDA will soon be on the map. You can help. You dont have to stand helpless, reading my blogs and being unable to help.  You can stand with us by signing and sharing the petition to get the NHS to recognise PDA. Follow the link.  It only takes a minute.

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