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kingcarr21

Ashtons Journey

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I feel like this is a great topic @kingcarr21. It's great hearing about your son. I come on FT almost daily, often multiple times a day and when all is said and done, we all like a good moan about stiff that doesn't matter. Like clappers, ticket prices, and ultimately, our football club which we all hold dear, but in the end is just a football team. 

 

So to hear about your personal situation is very humbling and helps give a sense of perspective. I know you're not looking for sympathy so that's not what we are dishing out (I think). I think (hope) that by sharing this with a bunch of randoms on here that it is a helpful process for you in being able to unload on us and know that someone is listening. It is never easy in these situations.

 

So keep it coming mate, I'm enjoying hearing about him.

 

Any if there's anything you need, or we can do, to help - then don't be afraid to ask.

 

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Need some ideas for a fundraiser. We did a fundraiser coffee morning last year and a raffle with the proceeds going into Ashton Private physio fund. That fund has gone down now and we are trying to think of fun ways to raise money. 

 

I don't want to just set up a just giving page as it feels like cheating. You know just putting it up and saying this is it give me money kind of feels wrong. 

 

Any ideas?

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On 30/09/2016 at 09:40, kingcarr21 said:

Need some ideas for a fundraiser. We did a fundraiser coffee morning last year and a raffle with the proceeds going into Ashton Private physio fund. That fund has gone down now and we are trying to think of fun ways to raise money. 

 

I don't want to just set up a just giving page as it feels like cheating. You know just putting it up and saying this is it give me money kind of feels wrong. 

 

Any ideas?

Fundraising is always a tough one because there are so many causes "competing" for our attention and money but I'd be inclined to set up a just giving or go fund me page. You've given a good account of Ashton's story here but its not like you've got your begging bowl out,so i think people respond reasonably well to that. 

 

I know you're not asking for handouts but the little man's story is engaging and at then end of the day people have the choice to donate or not, it's not like your forcing people to give. 

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The way I see it, whos to know that I'm telling the truth (I am by the way lol ) anybody could throw a sob story together then set up a giving page. When we had his coffee morning last year people suggested that there was nothing wrong with him cause his appearance didn't suggest he had a problem. So I like to do a fundraiser where people can meet him and learn about him and his condition first hand. Might be setting up another coffee morning with a raffle so will be selling raffle tickets at some point but want to think of other fun things we could do

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28 minutes ago, kingcarr21 said:

The way I see it, whos to know that I'm telling the truth (I am by the way lol ) anybody could throw a sob story together then set up a giving page. When we had his coffee morning last year people suggested that there was nothing wrong with him cause his appearance didn't suggest he had a problem. So I like to do a fundraiser where people can meet him and learn about him and his condition first hand. Might be setting up another coffee morning with a raffle so will be selling raffle tickets at some point but want to think of other fun things we could do

Foxestalk charity 11 aside match. 

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On 30 September 2016 at 09:40, kingcarr21 said:

Need some ideas for a fundraiser. We did a fundraiser coffee morning last year and a raffle with the proceeds going into Ashton Private physio fund. That fund has gone down now and we are trying to think of fun ways to raise money. 

 

I don't want to just set up a just giving page as it feels like cheating. You know just putting it up and saying this is it give me money kind of feels wrong. 

 

Any ideas?

The first time I ran the London marathon fo Loros we organised a race night in our local pub. We got some horse racing videos edited for this purpose and ran it as a tote with 50% of the takings going towards Loros and 50% shared between the winners,  people could also sponsor race horses. By the end of the night people were just dropping their winnings into the charity bucket. 

 

I also contacted the City, County and tigers for raffle donations. County sent a family ticket for the cricket, the Tigers a book both of which we raffled but City were fantastic and gave us Richard Stearmans signed Poppy Day match shirt which we auctioned for about £180. 

 

We we raised around £400/£500 pounds in a few hours. 

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43 minutes ago, kingcarr21 said:

Excellent news. We have been fighting for Ashton to receive the medium band of disability benefit ( which all the professionals say he should be receiving the medium band instead of the lower band). 

 

The wife noticed her bank balance was more than usual and we recently appealed (again) to the DLA so she gave them a call and turns out they have finally accepted he should be on the medium band and not only that but he will be going onto the higher band when he turns 3 in January which means things like a blue badge and carers allowance. It means my wife can reduce her working hours which relieves her work load. Things are starting to look up.

 

This weekend was a good one. Ashton getting really close to taking his first crawl forward. He can get himself into position from a laying down position to crawl. I'm putting his favourite toy just out of reach so he is moving his hands closer in order to reach his legs just wont move with him. Repetition is all we can do until his brains works it out. 

 

Did a car boot at the weekend to get some extra pennies for his Physio fund. Made £100 selling just random crap, DVDs, Toys, games and glassware. Quite a successful trip.

 

Back to nursery today. He has settled in really well. They will bring him on really well.

:thumbup:

Brilliant news mate on all fronts, you would not believe how much this has brightened my morning.

 

Nice to see that he is getting the help that he deserves and if that means your wife can work a bit less then that should help to take the pressure of you both.

 

 

 

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1 minute ago, stripeyfox said:

:thumbup:

Brilliant news mate on all fronts, you would not believe how much this has brightened my morning.

 

Nice to see that he is getting the help that he deserves and if that means your wife can work a bit less then that should help to take the pressure of you both.

 

 

 

Most certainly. She rarely has a day off so working less will be a big help. We are contemplating her not working at all. Will see how it goes when he turns 3 on New years day. Took him swimming yesterday. Not sure he enjoys his lessons cause other kids are too noisy (not their fault they are just enjoying themselves). With him having high sensitivity it upsets him but that cant be helped. Need to expose him to it so he gets used to it. He is getting better at tolerating noise. Things like kitchen cupboards and sneezes used to affect him but not anymore so there is an improvement.

 

Small gains and all that 

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11 hours ago, kingcarr21 said:

Great weekend. Ashtons pivoting has been nailed. His legs finally follow him now so he can now turn his body on the spot. Before he could go around but his legs wouldn't follow him so he would end up in an 'L' shape. Friday he just went and used his legs as well as his upper body (bit like an army crawl but around in a circle on the spot). 

 

He also managed to move his left leg on his own when the Physio helped him move forward in the crawling position. Both the pivot and his leg movement are massive steps towards him having some sort of mobility. Gonna try and get him on the move for his 3rd birthday on New Years Day.

 

Swimming has become a bit of a nightmare. They called earlier in the week asking if we could move to the 2:15 pm class on Sundays. What they didn't tell us was it was from the new term he would be in the 2:15 pm class. So there's me sat there with Ashton by the pool ready to swim only for the teacher to tell us we couldn't swim as it was the wrong time. Not amused. Water Babies really have messed us about so just gonna knock it on the head. Its too early for Ashton to swim anyway he doesn't enjoy it. 

 

So overall a very good week. Ashton finally gets his haircut tonight. Got a proper mop on him but after tonight he will look like a thug with his skin head lol

 

One thing i'm a bit gutted about is now Ashton is starting to get more strength and mobility he doesn't want you holding him on the sofa anymore. So the days of having cuddles watching TV just don't happen anymore. He just turns his body and climbs down off the sofa and stands up against the sofa, eventually dropping to the floor then goes off rolling around and watches the tv laying on his side. A sacrifice i'm willing to make though if it means he wants to get on the move. 

Good to hear mate. I'm rooting for the little guy.

 

As for swimming, if he's not enjoying it then no point forcing it.

 

As for the cuddles on the sofa, I think they grow out of that anyway. My 5 year old doesn't let me fuss him too much nowadays - unless he's poorly! He got sent home from school a few weeks ago because he had a temperature. I picked him up, gave him some calpol and then we had lovely snuggles on the sofa watching Zootropolis! 

 

 

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This is a wonderful thread and others have alluded to really does help put some things into perspective, particularly as a father myself. FoxesTalk is a mixed bag at the best of times but its threads like this that really set it apart and keep me coming back.

 

Re fundraising I think it's safe to say you have a kind audience right here on the forum so you could set the Just Giving up and trial it on here to see where it goes. Do not worry about asking, people have a choice. I would happily chuck a few quid in.

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  • 2 weeks later...

Not really much to update. Got my sons Blue badge so now when we are out and about parking is a little easier. His physio is still going well with him getting stronger all the time.

 

He did come out with a random noise a few nights ago as if he was trying to say something. Hoping his speech will begin to develop now he is getting older. Feel like it wont be long before he starts saying the odd thing. 

 

I've come to the conclusion that he is developing at approx 3 months as each year passes by. When he was 1 he learnt to hold his head up (sort of thing i would expect a 3 month old to be able to do). At 2 he was able to sit up unaided (6 month old stage) and now he is coming up to 3 years old he is rolling over and can get himself into the crawling position (9 month stage). Obviously these are averages and every child is different but generally these are the sort of ages when these milestones happen.

 

So going off that this time next year i am hopeful he will be crawling and learning to walk. Obviously as he gets bigger and heavier this will be more difficult so could take longer. Will see what happens.

 

We went to see the Neurologist on Monday. Ashton has now been discharged as now he has been diagnosed and community support is in place there is nothing more they can do. He measured Ashtons head circumference. Ashtons head has always been big compared to his body which is a common symptom from his condition but now his body has grew his head has stayed the same so now he is in better proportion. If his head continued to grow it would have suggested blood clots around the brain etc but now it all seems fine.

 

Hopefully i will have some great news before his 3rd birthday whether it be a word or an attempt at a crawl. Would be the best xmas present i could wish for.

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18 minutes ago, kingcarr21 said:

Not really much to update. Got my sons Blue badge so now when we are out and about parking is a little easier. His physio is still going well with him getting stronger all the time.

 

He did come out with a random noise a few nights ago as if he was trying to say something. Hoping his speech will begin to develop now he is getting older. Feel like it wont be long before he starts saying the odd thing. 

 

I've come to the conclusion that he is developing at approx 3 months as each year passes by. When he was 1 he learnt to hold his head up (sort of thing i would expect a 3 month old to be able to do). At 2 he was able to sit up unaided (6 month old stage) and now he is coming up to 3 years old he is rolling over and can get himself into the crawling position (9 month stage). Obviously these are averages and every child is different but generally these are the sort of ages when these milestones happen.

 

So going off that this time next year i am hopeful he will be crawling and learning to walk. Obviously as he gets bigger and heavier this will be more difficult so could take longer. Will see what happens.

 

We went to see the Neurologist on Monday. Ashton has now been discharged as now he has been diagnosed and community support is in place there is nothing more they can do. He measured Ashtons head circumference. Ashtons head has always been big compared to his body which is a common symptom from his condition but now his body has grew his head has stayed the same so now he is in better proportion. If his head continued to grow it would have suggested blood clots around the brain etc but now it all seems fine.

 

Hopefully i will have some great news before his 3rd birthday whether it be a word or an attempt at a crawl. Would be the best xmas present i could wish for.

How is he with you communicating with him? Does he understand you but just can't articulate himself?

Sorry if the question comes over as insenstive but am just interested to understand how you communicate on a daily basis.

 

 

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13 minutes ago, stripeyfox said:

How is he with you communicating with him? Does he understand you but just can't articulate himself?

Sorry if the question comes over as insenstive but am just interested to understand how you communicate on a daily basis.

 

 

Not insensitive at all. He understands quite well i think. Like if we are driving home when we get close to home he recognises his surroundings, so he knows he will be home soon so he starts to get excited as he knows he will be watching tv soon lol 

 

If i say to him would you like a drink he looks straight at his cup, or if i ask him where's teddy he looks at his toy. So he certainly understands what i'm asking him he just cant communicate back to me. We are looking into sign language and makaton. If he can pick it up at nursery then we will start to learn it.

 

The thing is now we just know what he would want at that time of day. When to feed him etc and just give him a drink so he doesn't really need to communicate back to us.

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9 minutes ago, kingcarr21 said:

Not insensitive at all. He understands quite well i think. Like if we are driving home when we get close to home he recognises his surroundings, so he knows he will be home soon so he starts to get excited as he knows he will be watching tv soon lol 

 

If i say to him would you like a drink he looks straight at his cup, or if i ask him where's teddy he looks at his toy. So he certainly understands what i'm asking him he just cant communicate back to me. We are looking into sign language and makaton. If he can pick it up at nursery then we will start to learn it.

 

The thing is now we just know what he would want at that time of day. When to feed him etc and just give him a drink so he doesn't really need to communicate back to us.

That last line, it's good that you know what he needs, when he needs it, but would it it be a good idea to encourage him to try to tell you when he needs these things?

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