What a nasty man

Aaaaaaahhhh the joys of a holiday in a caravan. Cheap, cheerful, full of fun, exciting times when you are a six year old. Like you've fallen on hard times when you are a forty-something. 

Alas, that is where we spent five cosy days during the first week of the Easter holidays and we had a brilliant time. All shacked up together in a small plastic cabin and not one argument between us. 

We hired a rather nice adapted static caravan. Excellent ramp straight to the door, not so excellent flushed access from the ramp and over the threshold but better than lifting over several steps. Lots of room inside and a large bathroom with a shower seat.

It was during the evening of day one that Dan first pointed out the height of the sink and cooker or lack of it. Of course, adapted means everything is lower for wheelchair users. 

Beds were a thing of torture but bearable yet it allowed us to have an adventure and spend time together which we haven't been able to do for a while. 

As it turned out Zack was much happier at base camp than going on a tour of beautiful North Wales. 

We visited a few towns, which, whilst quaint in nature seemed to have not moved past 1959. And don't get me started on lack of internet facilities. Day two of my unplanned digital detox had reached fever pitch by my cries of "Why is there no wifi?" By day three I had learnt to accept my holiday life and was a much more relaxed human being. 

Swimming was a daily activity, adventure was a given and falling into a dress rehearsal for a musical was a fortunate event. 

Pottery was painted and a child's gambling habit brought to the forefront by a determined father to win at the Trolls grabber machine even if it left him destitute and penniless. We were never successful and probably twenty quid out of pocket. 

There was a lot of eating. A lot of eating. But most of all, a lot of laughter. 

We encountered back to the dark ages disability discrimination from a lady of a certain age in a tatty old shop. 

This equated to a stand off between her, Dan and Zack. She being of the mind that he was not getting down the corridor of tat and Dan specifically telling her he was and he will and by no means is his son being forced out of a shop. End result, said lady of age going back behind her counter and in a loud voice making the statement, "What a nasty man." 

Ding, dong, round two. Now I'm involved defending the 'nasty man' and trying to explain that it wasn't very nice to not try and make the shop a bit more accessible for people with disabilities. She didn't care, she worked there six days a week she told me. I walked away knowing you can't educate the ignorant.

All that didn't matter when we watched a show that included children who were on holiday, one of which had cerebral palsy like Zack. The staff working in the show (are they entertainers? well you know the type, theatrical, sing a lot) made every effort to include her and she had the most beautiful voice when it came to her line to sing. 

You can't always get equality, but it's there in between the dark, pushing through. 

Disability equality aside, our staycation was a massive lump of joy. These are our good days and our lucky days. And when you have a child like Zack you treasure them even more. 

Snug little Bug

Zack has moved into his room. It's all finished and it looks brilliant. A proper little boy's room. Smells like one too. Why do boys just stink?

He slept reasonably well the first night. I didn't. He felt like he was in another country. Needless to say I ended up bringing him into our room, because, well, because he was a bit upset. Oh okay, it made me feel better. 

Since that first night, I no longer worry and he sleeps like a snug little bug. I have chosen a new bed for him, an all singing all dancing, all moving up down side to side and around bed. It will be here in a few weeks which will mean no more kneeling down and no more bad backs. 

Here are some pictures of his finished room. I love it. He loves it. Happy times.

Top End, note solar system

Bottom end, bed to follow 

He will start school

The good news is we finally managed to speak to someone at the hospital about Zack's EEG results and it shows that he is not in non-convulsive status. For now we carry on with the regime of introducing his new medicine. The dose he is currently on is below the therapeutic window, we still have room to increase before he will be getting benefit from this new drug. Without tempting fate, he is doing well, and all looks promising.

In other good news I finally managed to get to the hairdressers and rid myself of an awful root affliction.  Well, good news is good news.

Next year is a big year for Zack. He will start school. School. The very thought is terrifying and we still haven't made a firm decision about where to send him.
 
Whilst the decision making process is going on there is also lots of background activity happening with his statement of special educational needs. Reports have been requested from all manner of people involved with Zack including ourselves.

I have begun to write all about Zack and his educational needs but find myself saying lots of positive things that would lead you to believe he doesn't need help when in actual fact he needs lots of help. Help to access the world, help to understand his environment and a place that will see past his disabilities and understand his potential.

However for the purpose of the statement and in order to get the correct help I need to be blunt and very basic about his needs. I've put what I have written to one side for the moment in the vain hope that either a) some magic fairy will finish it or b)when I re-read it will actually be better than I first thought and not require too many amendments.

On top of school there is also plans a-foot at Casa Gould-Price. Planning permission has been granted for us to extend the house, providing a new kitchen area, oooooooohhhhh finally a new kitchen. Leaving the old kitchen as the new space for Zack's super crib and bathroom. Again. Thought of it fills me with dread. And again the thought of that is being pushed to the back of my mind until we are at the stage whereby we have past building regulations, chosen a builder and  are about to start work.

No wonder I need my hair done I am sure I will start to see grey hair soon. Failing that my four inch root problem won't look out of place when I check  in to a rehab centre having suffered a mini breakdown. Every cloud and all that.

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. 

Got rid of lots of options

That last post was my 200th post. Wow. 200 posts about one little boy.


Well, here's to the 201st post. Zack remains reasonably well, although he still isn't quite right. I can't put my finger on it but he just isn't 100%. We have an appointment with his consultant at the Child Development Centre soon, will ask a few questions then, perhaps she can shed some more light on things. 


We are currently looking at the dreaded world of adaptions. Yep, adapting part of the house for Zack so that he can have easy access to his bedroom, toilet, shower etc. We've been thinking about all this for some time. Come up with lots of options, got rid of lots of options and now down to one, possibly a second, lingering in the background.


The main one includes us paying for and having an extension to house a new kitchen. We were going to get the kitchen refurbished anyway, I had the spark of genius to suggest that the old kitchen would be a great room for Zack. Obviously without kitchen facilities. 


We would then build out into the back garden a new big kitchen/family room with French doors going outside, again easy access to the outdoor area for Zack.


We had the OT and the architect round. After lots of deliberating it seems it can be done. But there are obstacles, most of which are all too dull and boring to go into here. Upshot is, major work, massive work, all very stressful. 


Well, more stress in our lives, of course that's what we need. It was all getting a little boring round here anyway.


We now wait to here about the next step from the OT. I am trying not to think about it, best not to get worked up before even a brick has been removed.