Sunday, 2 February 2014

Long time no Duck

I have not written for almost two weeks. It's not because I have lost the motivation to write and its not because Ducks problems have suddenly disappeared but its because I have been to angry to write anything that could be in any way constructive. As it is I am still too angry but the whole point of the blog is to focus on Duck, the possibility of PDA type autism and the fight I have to get the right support for her. Its not just about Duck, its about all the children who are suffering at the lack of support from our mental health services. Time and time again I am hearing about people who have been on waiting lists for almost a year for basic services like occupational therapy. We are now on the list and I have been told its a maximum 18 week wait. We shall see. We also have an ADOS coming up. That's the basic autism assessment. Sadly its known to repeatedly fail to pick up on the subtle autistic traits of a PDA child. I am not holding my breath over the results. Indeed, I have Duck booked in for some other, more suitable tests through a private clinic. I am not prepared to sit back and watch Duck suffer any longer at the hands of services who don't listen. 

Duck hasn't been going to school well at all over the last couple of weeks. She hasn't been going to bed well either. Life with Duck has been a constant battle. I have regularly had to dress her like a baby, put her coat on her and carry her to the car, a sobbing mess. I have lost count of the physical attacks, punches, kicks and headbutting. I cannot remember how many times she has screamed that she isn't going to school, that she hates me for making her go and how I am the worst mummy in the world for strapping her safely in the car to drive her there.

I spoke to occupational therapy today, they offer a triage phone service for all new referrals. I was asked lots of questions about Ducks sensory issues. I was told Duck probably has Sensory Processing difficulties and they would send me some paperwork and some links which will have information on dealing with SPD in the post. I was not surprised they suggest SPD. Duck has had major sensory issues from a tiny baby and I have raised it many times, its just that until the situation gets drastic nobody listens to you. Sensory issues were raised from Ducks 3 year old assessment and again at 7 and again now. We are only being heard this time because Duck is also showing her violent behavior towards me at school and with other complications, everyone is suddenly worried about Duck.
The sad thing is she explained that children with SPD and eating issues usually struggle with the texture of food in their mouthes which is what OT are trained to deal with. Duck has no issues with food in her mouth, she has issues with food in her throat. Its totally different. Still SPD but mouth texture sensitivity is treatable, throat sensitivity, apparently, may not be. We will have to wait and see but that part of the conversation didn't sound positive. Being realistic, we could be looking at a long time on liquid foods.
School are still trying to help reduce Ducks anxiety. I don't know if they have been reading up on PDA handling techniques or if they are just freely experimenting but they have changed drop offs so senco meets us and takes Duck off to her office where they at various games, space hopper races and lots of other fun stuff for 20 minutes, then at the end of the day senco goes back to see her at the end of the day to try and de-stress her before she comes home. It's helping a little bit too. Duck has not been as aggressive, although she remains totally demanding.
Neither senco or I are foolish enough to believe it will work for long, but I am enjoying the simplicity of Duck getting herself ready for school whilst it does last. Duck already says she isn't going to school on Monday, despite being asked to take a card game in to play. We will wait and see what happens!
We have autistic support coming at some point to assess Ducks separation issues. I hope all the work done by senco doesn't stop Duck having a bad morning when she is being observed. The last time she was observed she went in like an angel with no support. I don't know why. Nobody told her and she can't have seen the lady observing but its like she KNEW! I can't help but wonder if a camcorder set up for a few days would be helpful, but I don't know if school can do that or if we could hide a camera enough for Duck to not notice.
Right now its Friday evening and my lounge is TRASHED! Duck and son have built a den to sleep in. They love being kids! They are planning on spending the night 'camping' on the lounge floor, watching DVDs and relaxing with the dogs. As for me, I will be snugly tucked up in my nice soft bed. I am most definitely to old to sleep on a floor these days! Duck And I  have been playing cards tonight, as usual I lost its odd that I always lose.
Tomorrow we may be baking, I keep hoping that encouraging Duck to cook and effectively 'play' with food she may be tempted to try something. Its not happened yet, but I will keep trying. Also tomorrow we have a church celebration to go to. There is a puppet show, puppet making, a meal and some evening entertainment including husbands band. Duck has said she doesn't want to go. Well, that's not quite true, she said she isn't going. Quite clearly and very assertively. Then Sunday, the church celebrations continue in the morning. Again, Duck is refusing to go. The problem we have is that although Duck tries to be in charge, she isn't really. We are. And we ARE going Saturday, and we will be going Sunday too. I now have a special 'meltdown' room allocated to Duck and I in church. So if at any point it all gets too much we can go and shut ourselves away from the gawping eyes and meltdown all by ourselves. Organization is the key... Planning the meltdown and making sure Duck is safe whilst she has a sensory overload.
Happy weekend everyone.


  1. Hope your weekend went OK after all, and that the work being done by the SENCO carries on - i.e. that she learns how to be flexible and change strategies as and when needed! x

  2. We had a really good weekend. Duck changed mind and asked to go to both church events. :-) I had a happy Duck most of the weekend. Long may it last. x