Thursday 17 May 2012

The break did us all good

We've been on holiday. Oh I do beg your pardon, we've been on a mini break. To the Lake District.


Found a lovely little self catering place to stay, which was so cosy, comfortable and clean that I could quite happily live there forever. Well, okay not forever, but definitely for more than a week or two. Liked it so much I am going to give it a little plug. Here's the link.


Ivythwaite Cottages, Windermere




Zack had a ball as we all did. He has been so happy and in such a good mood. The break did us all good. 


We've been on boats, in aquariums, visited animal parks. 


Here's the pics. Enjoy.

The Windermere

The Animal Park




Got myself a set of wheels from the gift shop




Afternoon tea for three

Zacky and Travel Teddy

On us boats

Fishes

Otters bum
Fishes....again.

Thursday 10 May 2012

Thank you soft play Mummy

Someone posted this on Facebook.


9 Ways You Can Help A Special Needs Parent


Some of it I like.


For example No. 1, No. 3 and No.8 and No.9.


Especially No. 8.


See My Child. I think Maria has eloquently put what I see too. My son. 


It's true for some people disability equals uncomfortable conversation, awkwardness, not knowing what to say, and so better to ignore than to engage. Sometimes people don't see the child, they see the disability first. They don't see the person. 


However I do understand the other side to this statement. As parents of children with special needs we can't stand and berate our friends or strangers because they may feel awkward. Before our lives change, I wasn't 100% comfortable with disability, I didn't understand. But I do now. And it's up to Zack and everyone who cares for him to allow others that distance, to allow others to ask questions and to educate those who may never experience what an absolute honour it is to care and love someone as brilliant as the Pants.


Everything is relative to the individual. It doesn't matter if you worry that your child may have a cold, it doesn't matter if you worry that your child isn't sitting yet, it's important to you and your world. And no it does not upset me to hear you share your stories of your children. 


Recently we took Scarlett and Zack to a soft play area. You know, one of those squishy, sticky, padded cells. Basically somewhere Scarlett can fall over and Zack can slide, roll and drown in a sea of coloured balls.


A young couple came along with their baby girl, a couple of months younger than Scarlett, we got to chatting as you do, usual thing, ages, milestones blah blah. I told her about Zack and just said he had Cerebral Palsy. Stock answer usually. It would take me an hour to explain all his added extras. 


When I say to someone he has Cerebral Palsy you usually get the ohhhhh polite nod and then silence. I usually change the conversation to ease their awkwardness rather than us stand their smiling at each other.


Not this time. This stranger, this lovely girl, asked me lots of questions about him. Asked why it happened. Asked if he liked his nursery. Asked if I still worked. Her other half was also interested. We spent the next half hour talking about Zack. Towards the end of the conversation she apologised for asking so many questions. 


Sorry? Sorry? No you carry on, I love talking about him. I don't mind at all, it was so refreshing. 


That young mummy was going back to college to train to become a nurse. I think she will be a very, very good nurse. Thank you soft play Mummy for taking the time to talk to me about my son. 

Wednesday 2 May 2012

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. 

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