We were looked after

Seriously lacking in the posting department. Also seriously lacking in the time department.

We've picked a builder. We still haven't started though. I feel like one of those Geisha girls doing tiny little steps, shuffling forward bit by bit. Almost there. Just a few bits of paper work to complete, wait a week or so, wait for a start date then D Day.

In the meantime, we've been on a little break. Well, we went in Easter to the Children's Adventure Farm Trust

A lovely place, down the road from us in Altrincham. Zack's favourite part was the huge Buddha Bags found in our little abode and in the Sensory Room. Think his dad liked them too......in fact think they both liked them too much.

The Children's Adventure Farm Trusts offers holidays and respite to families and children with disabilities as well as children who are disadvantaged or terminally ill. It's a beautiful place, has it's own sports hall, music room, sensory room, adventure park, sensory gardens, alpacas. Our days were packed, but equally we had time to do our own thing. We were looked after and fed well by the ladies that work at the Farm, who were tremendous given the fact that they were short staffed. So this is a big thank you from us, we had a fantastic time.

Here's some photos of our time at the farm.

Cuddles on the Buddha Bag

The Alpacas, note goofy on the left.

Outdoor sensory musical garden

In the Music Room

Grandad would be proud

Yeah........glad he isn't taking it up for real

Spot of rebound therapy

Can someone get me down now please?

In the walk through birdy bit, neither child was keen, they may have seen the Birds

One final hurdle

How to choose a builder?

There should be a book about this, somewhere on Amazon.

I am sick of the sight of builders quotes. We have our planning permission and our building regulations passed. We almost have the green light to begin the adaption to our home for Lord Zack.

One final hurdle, deciding on a builder. All the quotes have been coming in around about the same costs, apart from the odd one or two which are either ridiculously low or stupidly high.

We now have it down to two and I can't decide. I have a meeting with the grants department next week to move forward with the grant application so maybe they could help me with my dilemma.

It's scary stuff deciding on who is going to effectively devour all our savings. At least by the end of it all Zack will have a brand new crib and I will have a lovely new kitchen. We just won't be able to afford to eat anything but at least it will stay clean. Oh the thought of a perfectly lovely clean kitchen.

Fruit and nut bar

We got Zack's statement of educational needs through. Along with the proposed school which he will attend in September.

There were no surprises, it was as expected, what was not expected was how vague the statement appeared to be. It said lots of good things, but equally not specific things.

I know the assumption may be to think that the school Zack will go to will be able to fulfil his needs and provide him with the opportunity to be educated in a form that will suit him. But seen as this is a legal document I would like it to be more formal, more specific, black and white and not so grey.

So armed with a large fruit and nut bar, it is Easter I need some chocolate treat, I hide myself away for a couple of hours, reading through all the reports, making notes and then re-reading through the statement making notes.

Result is a document to the LEA detailing or requesting specific information to be written in to Zack's statement. I will now send this off and await there response. No doubt I think there will be a face to face meeting. Perhaps a battle. I don't want to battle I just want it to be right for him. He can't talk, he can't fight, I have to be his voice and sometimes it gets weary being the voice of two people.

Life has a right to exist

There has been a bit of a breezy storm on twittersphere and other social networking sites this past week.

About this man.

Colin Brewer

A Cornwall Councillor who apparently remarked that all disabled children should be put down. He has since resigned. It only took him two years to do so.

Turns out Cornwall seems to have another councillor, leader of Children Services no less who has also made a few flippant remarks.

A Mr Neil Burden

Click on their names to read the full story as I really cannot be bothered to provide a synopsis of the trash they talk.

A lot of parents of children with special needs are rightly upset by these comments. I just found them to be outdated and small-minded.

I am not upset by them. After all I don't live in Cornwall and those men are probably idiots, trying to find ways to cut budgets, realising that yes, providing care, therapy, equipment, etc. etc. does take a large chunk of the town hall budget. Because of this they point the finger towards the weak and needy. What are they actually saying that those, for whatever reason that are less fortunate than our able bodied selves should all quietly disappear?

Are they actually saying what others are too afraid to say? That our children are expensive, that our children will probably not be able to give back to society in monetary terms, that our children do not have a right to exist?

Life has a right to exist and with it so does my child and all his extra costs. We live in a society that chooses to care for those that need our care, we are meant to look after the less fortunate. And what does Zack give back, you see that, Mr Brewer and Mr Burden is something you unfortunately do not have the pleasure of receiving. You will never understand that a person, a human being, be that they can't speak, walk, feed themselves or move any part of their body can say a thousand words in one look. That they can make you understand what it means to feel real unconditional love, and most importantly that by sharing in their life you learn more about the world, human nature and what it means to live than any other path you may walk.

Attitudes like theirs need to change. People need to see past the disabilities. We need to stop making assumptions about children and adults with disabilities, we need to learn more and stop assuming that our pre-conceived ideas are the truth. There are people out there trying to make a difference and trying to teach others. One such person is Zack's little Conductive Education pal Issac and his parents. They have set up a website that aims to promote what it means to be disabled. You can check them out here Izzys Busy they offer talks to schools and universities, which I think is a fantastic idea. After all it is only by educating others, normalising disability that we may perhaps move towards a deeper acceptance rather than just paying lips service to it.

I guess I am not upset, just angry.

Legs in casts

Took Zack to have his feet put in casts today.

He hasn't broken them, he was getting fitted for some splints or to use the correct term, Ankle Foot Orthosis (AFO).

They look like this.


AFO Pictures

And are designed to help provide more support for the ankle and knee. The physio suggested we get some as Zack is doing more standing. By that she means more standing in his standing frame but equal there is now evidence of him pushing through his legs to stand. This is all thanks to Conductive Education and not the physio he receives via the NHS, that is neither here nor there.

The other reason for Zack to have AFOs is that his ankle is rolling out, it isn't quite straight. Probably due to the fact that he doesn't use his legs and that his spasticity in his muscles is also pulling it in that direction. When I was shown the cast I could see quite clearly how the ankle turns out, it isn't extreme but it is visible.

Zack quite enjoyed having his legs put in casts. In fact, he was extremely relaxed. Scarlett enjoyed eating her milky bar, sitting on the big bed and accidently banging her head on the wall.

We chose red splints with footballs on them, a popular choice we were told.

This week I will be leaving Zack at Boot Camp on his own. Not entirely on his own the other children will be there along with his Conductive teacher and assistants. Yes, Zack will be at torture school by himself. I think he has come a long way since we began the sessions. He very rarely cries any more, he doesn't moan much, I would go so far as to say that he is starting to enjoy the sessions. What's more I think that the staff have a very good understanding of Zack and his needs, how he reacts to certain things and what his cut off points are. Think we can stop referring to it as torture school now and it will affectionately remain as boot camp.

The Legacy Rainbow House is much more than a place where I take Zack for Conductive Education it also offers support, information and help in many areas of Zack's life. Of the therapies Zack has taken part in this is the only place which takes a genuine interest in the child outside of the centre. They have been there to help with my statement process, offer extra guidance for home therapy, provided equipment through school holidays so that I can continue with the programme. They have also helped in funding. Rainbow House is a fabulous place and a fantastic charity. Take a look at their website and if you do know of any companies/individuals considering supporting a local charity please, please mention them.

Big bold letters

Had a busy afternoon. Turned into two simultaneous meetings with two different Occupational Therapists.

One came round to look at Zack's chair in an effort to ascertain whether it would be practical to order the same one for school. The other came round to look at what I need with regards to the adaption and hoisting.

Alongside this I had Scarlett running round thinking everyone had come to play with her and calling the first O.T nanny, despite my attempts to explain that this wasn't her name and not every lady who comes to visit is called Nanny. 

The hoist man was very helpful, sorted out what type of shower bench thingy we are going to have in Zack's new wet-room. We also tried Zack out in a hoist, well a portable hoist, kind of a big blanket that cradles him as he is lifted. He quite liked it, looked very cosy. 

I think some parents may get upset at the point whereby hoists and tracks are mounted to the ceiling. Guess it says in big bold letters your child can't and probably won't ever walk and you need this equipment in order for you to safely move him from place to place. I wasn't phased, to me it's just something extra we need in order to make our situation work. He's only little now but in a few years my back may not be saying "ohhhh go on pick him up you can take it." 

By the way did you notice I said probably never walk. Just because we have adaptions, hoists, special seating etc. doesn't mean I give up on hoping. The day I do that is the day I've given up on him and I don't know what the future will bring........

Most likely a tracking and hoist system though.