Ashtons Journey

[kingcarr21]

Another update.

 

Finally chose the car we are going to have on the Motability scheme. The SEAT Ateca. Good size, decent boot and the Wife is happy with how it drives.

 

Only a 1L engine 115 BHP but she said it drives so well and we don't need a monster of a car. We could have got the SEAT Leon FR 2L Turbo on the Motability scheme. So tempting  

 

SEAT will buy her old car off her for £2210. We only have to pay £400 advance payment for the Ateca and we have £500 left on the finance of the wife's current car so we will come out with a brand new car and £1300 in our back pocket.

 

All money that helps Ashton's treatments continue.

 

Physio is still progressing nicely. Small gains and all that. Just waiting for Snowdrop to get back to me with his first appointment. The waiting list is up to 5 months so have a long wait i feel.

 

Ashton now has a new walker which straps him in with a harness so should make walking a little easier to do for him. Got his new pushchair on order and his new Pedro Special Boots also on order.

 

It's non stop and i have the easy role. The wife everyday is here, there and everywhere.

 

 

 

[kingcarr21]

Happy with his new walker

[stripeyfox]

6 minutes ago, kingcarr21 said:

Happy with his new walker

Love this mate! He looks well chuffed with himself!
 

[kingcarr21]

1 minute ago, stripeyfox said:

Love this mate! He looks well chuffed with himself!
 

He always liked his old walker. The problem was the frame went in front of him so he had to push the walker. With him barely walking on his own having the extra weight to push didn't help.

 

Now with this walker the frame goes behind him so its easier. We have a harness that needs to be attached to it so he doesn't need to pull the walker with his hands. He can use his whole body to pull it along which should make it easier for him to take his steps. 

[Beliall]

17 minutes ago, kingcarr21 said:

Happy with his new walker

Needs a LCFC sticker on it to go with that bling paint job. Awesome. Happy for you all

[kingcarr21]

Update time. Ashton is beginning to explore a lot more now. Crawling to toys that he wants to play with now instead of sitting there waiting for you to pass them to him.

 

went to a conference on Thursday with lots of stalls and seminars for kids with disabilities. New push chairs and new car seats look brilliant for Ashton but cost over £2000 each. Madness. You can get charity funding to cover the cost but only if u are on benefits. The wife works 20 hours so we wouldn't be entitled. 

 

Makes you laugh that there is no incentive to work. We would be far better off being on benefits knowing we would get all the extra equipment for Ashton (and actually earn more money through benefits). Don't like the idea of the wife "sponging" but it looks like it may have to be the way to go to get the gear Ashton needs. So frustrating. Can see why people don't work when there just is no incentive to earn your own money. Sorry state of affairs.

 

we hav an appointment on Tuesday for a new pushchair for ashton that will be better suited for him. See how that turns out. 

 

Heres a pic of him excited for his dinner. Still loves all foods bless him. There is nothing he doesn't like  

[spacemunky]

Look at that smile! 

[Strokes]

16 hours ago, kingcarr21 said:

Update time. Ashton is beginning to explore a lot more now. Crawling to toys that he wants to play with now instead of sitting there waiting for you to pass them to him.

 

went to a conference on Thursday with lots of stalls and seminars for kids with disabilities. New push chairs and new car seats look brilliant for Ashton but cost over £2000 each. Madness. You can get charity funding to cover the cost but only if u are on benefits. The wife works 20 hours so we wouldn't be entitled. 

 

Makes you laugh that there is no incentive to work. We would be far better off being on benefits knowing we would get all the extra equipment for Ashton (and actually earn more money through benefits). Don't like the idea of the wife "sponging" but it looks like it may have to be the way to go to get the gear Ashton needs. So frustrating. Can see why people don't work when there just is no incentive to earn your own money. Sorry state of affairs.

 

we hav an appointment on Tuesday for a new pushchair for ashton that will be better suited for him. See how that turns out. 

 

Heres a pic of him excited for his dinner. Still loves all foods bless him. There is nothing he doesn't like  

Mate you need to maximise your earnings and if welfare is the best way forwards then you should just do it. That picture has brightened up my morning

 

[stez]

Your lad is a little charmer! Having a brother with special needs who wasn't supposed to live beyond 3, but it's celebrating his 34th birthday today, so I know how many barriers are constantly put up, mainly in an effort (it seems) to put people off claiming anything, and the battles my mum and dad have had in the past it's ridiculous that people are made to fight for what should be their right. 

 

Anyway that's my little rant. 

[Jon the Hat]

I understand your point on benefits, but honestly if my taxes aren't supporting little kids to have the help they need then I struggle to believe in the welfare state.

[kingcarr21]

Great news. Got a cancellation for Ashton's Snowdrop program so he starts in April instead of July. Going Devon on Monday the 10th. Gotta drive back that night to go Madrid the Tuesday morning  

 

Got his new pushchair as well so good couple of days 

[kingcarr21]

[kingcarr21]

This pushchair will keep his torso straight. Normal pushchairs we hav been using he slouches in so this will help develop his posture. Which ultimately leads onto a better walk and run. Glad we didn't have to wait

[Strokes]

He looks fuming with that pushchair  

[kingcarr21]

50 minutes ago, Strokes said:

He looks fuming with that pushchair  

He actually loves it. Feels like a King  

[kingcarr21]

Turns out my trip down to Devon which I thought would be an all day thing is only going to be for about 2 hours. So luckily I wont be home too late to pack for Madrid. Really looking forward to getting him started on the Programme. Think its just what he needs to bring him along quicker. A little girl at Ashton's nursery went on the programme. She had a stroke and lost her ability to use her left hand side. The programme she was given stimulated her brain to teach itself how to use her LHS again. She is now walking and using her left arm. Speech has also come on as well. So I have seen first hand what results the programme can produce. 

 

I yearn to hear Ashton call me Daddy. I will burst into tears of joy when his speech comes along.

 

His Just Giving page has now reached £1100. I would love for the Programme to produce some great results so I can show just what peoples generosity has achieved for him. The next 6 months is certainly looking up for Ashton.

 

My back garden will be used to teach him to play football. That is my mission  

[kingcarr21]

So this time next week Ashton will be having his first assessment at Snowdrop. Really looking forward to getting started. This last week i've noticed Ashton being a bit more mobile. Wanting to crawl around the room to get to toys etc. Also he has been a little chatty. Making various noises as if trying to talk. I truly believe this Snowdrop program is just what he needs to really get him going. Got a meeting with his Nursery in May to discuss his education. At this moment in time there is no chance Ashton will be going to a mainstream school. So will be interesting to see what options we have available to us.

 

The wife is still contemplating giving up her job. Will see how we get on for the time being.

 

Not really much else to update. Hoping once his program starts the updates will be more frequent with some good results. Fingers crossed

[stripeyfox]

11 hours ago, kingcarr21 said:

So this time next week Ashton will be having his first assessment at Snowdrop. Really looking forward to getting started. This last week i've noticed Ashton being a bit more mobile. Wanting to crawl around the room to get to toys etc. Also he has been a little chatty. Making various noises as if trying to talk. I truly believe this Snowdrop program is just what he needs to really get him going. Got a meeting with his Nursery in May to discuss his education. At this moment in time there is no chance Ashton will be going to a mainstream school. So will be interesting to see what options we have available to us.

 

The wife is still contemplating giving up her job. Will see how we get on for the time being.

 

Not really much else to update. Hoping once his program starts the updates will be more frequent with some good results. Fingers crossed

Good to hear mate. I really hope the session at Snowdrops goes well. It galls me a little bit to think how hard you have had to work to scrape together a  £1000. I'm sure a bit more money will be needed, particularly if it goes well, so then we'll really have to kick the fundraising on.

 

Sounds like he really wants to move around and communicate which must be a good sign.

 

Regards the job/benefits situation, you have to do what is right for your family. I was talking at my kids swimming lesson with one of the mums (as I often do ) and she was telling me she worked in social care in Derbyshire and I recalled what you said about jacking in work in order to get a "better" deal for Ashton. She told me there was this kid, a teenager with Autism, who they were planning to send on holiday to Cyprus for two weeks with two carers, all at taxpayers expense. I said "couldn't they just take him to Butlins for a few days", but they council are shit scared of being sued for not "looking after him" or something. The kid needs a sunshine holiday, apparently. Well, you know what - so do I, but I can't afford it so tough on me. Then I thought about your situation with Ashton and couldn't help thinking the few grand spunked on this ridiculous holiday for this kid would help buy him the equipment which would make a massive difference to him. Whilst I sympathise with the autism kid, there is only so much money to go around - I would rather my tax went to those who really need it, and for whom it would really make a difference!
 

Sorry to get political, and I don't want to derail the thread in any way. Love hearing about the boy.

 

If I win the lottery this week mate, you'll be first on my "good causes" list.

 

Take care x

 

[kingcarr21]

13 minutes ago, stripeyfox said:

Good to hear mate. I really hope the session at Snowdrops goes well. It galls me a little bit to think how hard you have had to work to scrape together a  £1000. I'm sure a bit more money will be needed, particularly if it goes well, so then we'll really have to kick the fundraising on.

 

Sounds like he really wants to move around and communicate which must be a good sign.

 

Regards the job/benefits situation, you have to do what is right for your family. I was talking at my kids swimming lesson with one of the mums (as I often do ) and she was telling me she worked in social care in Derbyshire and I recalled what you said about jacking in work in order to get a "better" deal for Ashton. She told me there was this kid, a teenager with Autism, who they were planning to send on holiday to Cyprus for two weeks with two carers, all at taxpayers expense. I said "couldn't they just take him to Butlins for a few days", but they council are shit scared of being sued for not "looking after him" or something. The kid needs a sunshine holiday, apparently. Well, you know what - so do I, but I can't afford it so tough on me. Then I thought about your situation with Ashton and couldn't help thinking the few grand spunked on this ridiculous holiday for this kid would help buy him the equipment which would make a massive difference to him. Whilst I sympathise with the autism kid, there is only so much money to go around - I would rather my tax went to those who really need it, and for whom it would really make a difference!
 

Sorry to get political, and I don't want to derail the thread in any way. Love hearing about the boy.

 

If I win the lottery this week mate, you'll be first on my "good causes" list.

 

Take care x

 

PC gone mad hey. I just can't believe how expensive things are. Even toys. Cause it's called a "sensory toy" it's like triple the price of a similar toy. Regular car seats cost like £100-200 but a special one that swivels on its base cost £2500. How can that be?? Shocking

 

alot of things nowadays are just box ticking exercises and not actually in the best interest of the person who needs the help. Really is a sorry state of affairs

[Jon the Hat]

10 hours ago, kingcarr21 said:

PC gone mad hey. I just can't believe how expensive things are. Even toys. Cause it's called a "sensory toy" it's like triple the price of a similar toy. Regular car seats cost like £100-200 but a special one that swivels on its base cost £2500. How can that be?? Shocking

 

alot of things nowadays are just box ticking exercises and not actually in the best interest of the person who needs the help. Really is a sorry state of affairs

For things like car seats, it will be all about volume.  A specialist piece of kit is probably made in a small factory in the UK a few at a time, while the mass produced stuff is pumped out thousands an hour in a mega factory in China.

[kingcarr21]

10 minutes ago, Jon the Hat said:

For things like car seats, it will be all about volume.  A specialist piece of kit is probably made in a small factory in the UK a few at a time, while the mass produced stuff is pumped out thousands an hour in a mega factory in China.

Agreed but the specialist car seat isn't that much different to a regular car seat. Just a heavy swivel base. The seat itself is no different. 

 

I just cant see how it can be so much more expensive. Like I said about sensory toys. They r so much more expensive and yet are barely any different to the equivalent toy. Stick a couple of lights on it and the word sensory to it and your £10 toy is now £80 and that's not an exaggeration 

 

 

[kingcarr21]

Ashton has just walked with his walker unaided for the first time. It took an iPhone out of reach for him to do it  

 

a big step that has come just before we go Devon to begin his programme. This really is going to be a big year for him 

 

Over the moon

[kingcarr21]

In the hotel down in Devon about to go sleep ready to go to Snowdrop tomorrow and start Ashton's brain stimulating program. Now the real work starts. 

[spacemunky]

2 hours ago, kingcarr21 said:

In the hotel down in Devon about to go sleep ready to go to Snowdrop tomorrow and start Ashton's brain stimulating program. Now the real work starts. 

Good luck to you, and of course to Ashton! 

[Jon the Hat]

2 hours ago, kingcarr21 said:

In the hotel down in Devon about to go sleep ready to go to Snowdrop tomorrow and start Ashton's brain stimulating program. Now the real work starts. 

good luck!