Battle, bureaucracy and bollocks

Where have we been? It's been a while since I last posted and to tell you the truth I haven't had much spare time.


Most of my time has been taken up on the battlefield. Just one ridiculous fight after another.


On the plus side Zack has wangled an extra day at nursery, he now attends three mornings a week. He's not very happy about it. I am.  He also has a new looker-afterer, he's not very happy about that either. As his dad said, he has to get used to different people. I suppose he needs to just shut up and put up then. 


Met with the ENT doctor about Zack's glue ear. Really wished I hadn't met with the ENT doctor about Zack's glue ear. I swear I am talking a different language in there as he doesn't seem to hear me. Pun not intended. I was asking for gromits for Zack, he said they wouldn't make a difference as his hearing is the same even with hearing aids in...do you remember this discussion from about a year ago? I kind of get what he means but at the same time, how helpful is it to have glue ear, surely leaving it for three years isn't healthy. 


We also discussed Zack's snorting at night. Again, took me about ten minutes to get him to understand. We are having a sleep study at some point to see what's happening. He recommended nasal decongestants, which by the way I have since found out you can't buy over the counter as he suggested, oh and nor can my GP prescribe them, so ball back in his court. Do you see why I haven't time to blog. 


Adaption is back to feasibility stage. At least I managed to get grants lady round to look at the house and make useful suggestions. She was very helpful and is returning with her boss due to the complicated nature of the house/job. 


At this point, all of the above can go and shove itself up it's own backside. I have had enough of all the battle, bureaucracy and bollocks. Sometimes I think people that are involved in lives such as mine need to experience the reality of it all. Things need to be simple. Easy. Co-operative. 


Ha. Wake up. When will that ever be the case. 

Comments

TOTALLY!
Never ceases to amaze me how people who are essentially employed to deal with disabled kids and their families, in whatever capacity, JUST DON'T GET IT!
When we were looking into our home being adapted we were told a flat no (because we private rent plus it was an old cottage) and that we would just have to move, probably to a council house of their choice, in a location of their choice. Whats more, we basically should be grateful for it. Simple. The man on the phone actually made me cry (and it takes a lot). He COULD NOT understand that this was our home and that it really wasnt that simple. It wasn't even what he was saying- I understood the logic- it was the WAY he was saying it, as though having a disabled child meant we should just take things as they come- just give up a home we have lived in for 10 years with Caitlin and also my Mum within walking distance from our front door (essential!!).In the end we presuaded him to come out and see our home. He looked us int he eye and said he couldn't help. Paul said :Do you mean you can't or you won't?' He looked at us sitting there, with our whole world shattered and now expecting us to leave our home on top of everything and said 'I wont' I couldn't believe it. I wanted to kill him. That's when having a calm articulate english teacher come actor husband came in handy. Paul gave him the best speech of his life about the reasons we wanted to stay, why it was so important. I t could have been in a film! I had given up, I was just silently weeping on the inside. You know what? He changed his mind, right in front of us. He walked round the property with Paul who was suggesting ways it cold work (ie doing the guys job for him!) . Lo and behold we got it all sorted. I will always wonder why it took that though, and what we would have done if we had been less credible or if I had been on my own that day and unable to argue (I just couldn't any more). His attitude was shocking- as if asking us to leave our home was nothing. They weren't even due to consider us until Elin was five due to the waiting list in Wrexham, it took Paul making a VERY assertive phonecall to the OT and writing a letter of complaint to even get to the evil-man phonecall point! Keeping fighting the beuarocracy Linzi cos you know it's all bollocks- but that doesn't make it any easier does it. Heaps of love xx
Sat and read this with my mouth open. Cannot believe he said he wont help I mean where is his compassion or understanding. Regardless of the fact Elin has a disability isn't just human nature to want to help. OOOOh what a horrid person.
Well done Paul on getting the turn around and Ruth I know how hard it is to battle sometimes you feel like
you just can't fight anymore.

Feel like we are inching forward with ours, grants people are trying to help but the lack of a OT isn't speeding things up.

Hugs to you all.

Linz
xxx

Popular Posts