Ashtons Journey

[ozleicester]

Thanks so much for the continued updates. Such a pleasure to read of his and your progress. 

 

 

[kingcarr21]

4 minutes ago, Beliall said:

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?

We do now.

 

When its time for something i know he wants we have now created a board with pictures. We have various pictures of toys, drink, food etc and we stick 2 pictures on the board. Then we get Ashton to point to what he wants. Its very much an 'in progress' thing as he is still trying to work out how to point. 

 

So if i put a couple of pictures on the board of say myself and the other picture the wife ill ask him where's mummy and he reaches to her picture. If i think hes gone a little while without a drink i will put his drink picture up and the other picture (a toy for example) and ask him what he would like. He is still getting to grips with it so its not very successful at the moment but i'm sure he will get it eventually. It's the sort of thing that nursery will help him along with.

 

 

[Beliall]

19 minutes ago, kingcarr21 said:

We do now.

 

When its time for something i know he wants we have now created a board with pictures. We have various pictures of toys, drink, food etc and we stick 2 pictures on the board. Then we get Ashton to point to what he wants. Its very much an 'in progress' thing as he is still trying to work out how to point. 

 

So if i put a couple of pictures on the board of say myself and the other picture the wife ill ask him where's mummy and he reaches to her picture. If i think hes gone a little while without a drink i will put his drink picture up and the other picture (a toy for example) and ask him what he would like. He is still getting to grips with it so its not very successful at the moment but i'm sure he will get it eventually. It's the sort of thing that nursery will help him along with.

 

 

I shouldn't have asked, it's clear you have all the bases covered. He's lucky to have you as parents.

[kingcarr21]

Just now, Beliall said:

I shouldn't have asked, it's clear you have all the bases covered. He's lucky to have you as parents.

haha we are just doing what any other parent would do. It's only recently we have adopted the board. It was an idea his care worker suggested. It's just another way for him to communicate with us without the need for speech.

 

It's hard to remember to use the board as you just take the easy option and get his drink for him anyway. I'm not overly concerned as i think his communication will come along as time goes on. Like i said in a previous post i think he is progressing at 3 months for every year so i think he will naturally start to pick up words over the next 12 months. 

 

I read a story about a woman who found out she had the same condition at the grand old age of 66. She was told her childhood was different as she developed really late but obviously technology back when she was young was non existent. She said she had lived a normal life and managed no problem just took her longer to get to grips with things. Reassuring when i read those sorts of stories that Ashton will be fine as time goes on. 

[stripeyfox]

It must be frustrating for him and you. The pictures and sign language sound like a good idea.

 

He looks and sounds like a lovely little boy and you and the wife are doing a great job in taking care of him.

 

 

 

 

[kingcarr21]

Just now, stripeyfox said:

It must be frustrating for him and you. The pictures and sign language sound like a good idea.

 

He looks and sounds like a lovely little boy and you and the wife are doing a great job in taking care of him.

 

 

 

 

He's my little buddy. He goes mental when he sees me come home from work i'm certain he loves me more than his mum  

 

Its not frustrating for us as we know it cant be helped. I suppose the feeling of frustration went along time ago when we understood and accepted his condition. Took the wife longer than me to accept it as she felt guilty as if it was her fault (which it obviously wasn't) and the sight of all his equipment he received was very daunting. 

 

He really is a dream child. So easy going and always happy. Obviously that is heavily because of his condition but its not like he is sat there with a blank look in his face as if to say he has no idea whats happening around him. He's very alert and expressive in the faces he pulls and the sounds he makes (like blowing raspberries and 'grunt' noises when he gets excited)

 

I get the easy part though. My wife is most certainly the one who takes most of the plaudits with him. Cant be easy taking him to all his appointments and nursery sessions at STEPS. I've been STEPS twice and its heartbreaking to see the other kids so for the wife to go every week is tough. The other parents are absolute soldiers. Really opens your eyes when you see what others have to go through. Certainly gives you a better view of life and whats important. 

[stripeyfox]

On 10/27/2016 at 15:27, kingcarr21 said:

He's my little buddy. He goes mental when he sees me come home from work i'm certain he loves me more than his mum  

 

Its not frustrating for us as we know it cant be helped. I suppose the feeling of frustration went along time ago when we understood and accepted his condition. Took the wife longer than me to accept it as she felt guilty as if it was her fault (which it obviously wasn't) and the sight of all his equipment he received was very daunting. 

 

He really is a dream child. So easy going and always happy. Obviously that is heavily because of his condition but its not like he is sat there with a blank look in his face as if to say he has no idea whats happening around him. He's very alert and expressive in the faces he pulls and the sounds he makes (like blowing raspberries and 'grunt' noises when he gets excited)

 

I get the easy part though. My wife is most certainly the one who takes most of the plaudits with him. Cant be easy taking him to all his appointments and nursery sessions at STEPS. I've been STEPS twice and its heartbreaking to see the other kids so for the wife to go every week is tough. The other parents are absolute soldiers. Really opens your eyes when you see what others have to go through. Certainly gives you a better view of life and whats important. 

Little boys always love their dads more! 

 

I didn't mean any offence by saying it must be frustrating. I guess it is difficult to understand (not being in your shoes). I have no idea how it is for you guys on a day to day basis,  but I am so pleased that you are getting the help you need and that Ashton knows love from his mum and dad and that is the most important thing!
 

You're right about perspective. My missus works on the childrens cancer ward at the LRI and used to work in respite care for terminally ill children. I can't even imagine how tough that is. But it is amazing how people find a way to cope with all sorts of shit that gets thrown at them.

 

Be nice to meet up one home game mate so I can buy you a beer and chuck a few quid in for Ashton's physio fund.

[DANGEROUS TIGER]

The wee lad is very bonny, and I am sure that things will eventually come to full fruition, even though it will be one step at a time. Nursery school I am sure, will be a delight for him.

 

I shall keep an eye on your posts, and I wish you and your family the very best of wishes for the future.

[kingcarr21]

Ready for Halloween at his nursery.

 

this picture just shows how important his physio sessions are. His legs are getting much stronger now where he can stand against the sofa. Still can't stand unaided but his muscles will only get stronger. Once he is confident in himself of standing then hopefully will start to see him want to venture and move along the sofa. Slowly but surely

[Manwell Pablo]

On 10/27/2016 at 20:31, stripeyfox said:

Little boys always love their dads more! 

 

I didn't mean any offence by saying it must be frustrating. I guess it is difficult to understand (not being in your shoes). I have no idea how it is for you guys on a day to day basis,  but I am so pleased that you are getting the help you need and that Ashton knows love from his mum and dad and that is the most important thing!
 

You're right about perspective. My missus works on the childrens cancer ward at the LRI and used to work in respite care for terminally ill children. I can't even imagine how tough that is. But it is amazing how people find a way to cope with all sorts of shit that gets thrown at them.

 

Be nice to meet up one home game mate so I can buy you a beer and chuck a few quid in for Ashton's physio fund.

 

 

 

 

 

 

Jesus christ.

 

I get teary eyed working with data on that stuff never mind actually being on the ward, kudos to her. 

[stripeyfox]

Just now, Manwell Pablo said:

 

Jesus christ.

 

I get teary eyed working with data on that stuff never mind actually being on the ward, kudos to her. 

It's tough and she does suffer with it sometimes, but, as she'd be the first to admit, it is nothing compared to what the parents are going through.

 

Then she'll ask me how may day was and usually my biggest problem is not being able to get a spreadsheet to work properly 

 

Reminds me of that sketch in Mitchell and Webb where one of them is a brain surgeon and his partner works as a taster in an Ice Cream factory. They then proceed to have a discussion about how stressful their jobs are!
 

 

[Webbo]

2 hours ago, kingcarr21 said:

Ready for Halloween at his nursery.

 

this picture just shows how important his physio sessions are. His legs are getting much stronger now where he can stand against the sofa. Still can't stand unaided but his muscles will only get stronger. Once he is confident in himself of standing then hopefully will start to see him want to venture and move along the sofa. Slowly but surely

What a smashing looking kid.

[stripeyfox]

33 minutes ago, Webbo said:

What a smashing looking kid.

He looks a dude doesn't he? 

[Merging Cultures]

Ready for Halloween at his nursery.

 

this picture just shows how important his physio sessions are. His legs are getting much stronger now where he can stand against the sofa. Still can't stand unaided but his muscles will only get stronger. Once he is confident in himself of standing then hopefully will start to see him want to venture and move along the sofa. Slowly but surely

That's brilliant mate! He's progressing so well.

[kingcarr21]

Just a quick update. Been practicing his crawling where i control his legs and he moves his arms himself. Getting quite good at it now and he can get himself into a crawling position from laying flat. Coming along really well might be sooner rather than later he will be on the move. 

 

The Charity Dinner is coming up (same day as LCFC vs Bruges) which should be a good fund raiser. 3 course meal, auctions and raffles etc with 100% of donations going to STEPS. 

 

Im going New York next week going to be weird going away without the kids. A much needed break for me and the wife

[SystonFox]

He looks a right little cracker mate. The stories you are updating us with are great. Being a parent is a wonderful thing. Absolute best thing I ever did and I cannot wait to see my boy grow up. 

 

Enjoy your time away mate! 

[Crinklyfox]

18 hours ago, kingcarr21 said:

Im going New York next week going to be weird going away without the kids. A much needed break for me and the wife

I used to travel overseas for work on a fairly regular basis and leaving my children was always heartrending for me.  Thirty years on I can still see my young son sobbing his heart out as he and my wife waved goodbye to me as I left for a three week stint in China.  I felt truly awful.  However children adapt pretty quickly and soon after I'd gone he was back to normal - I, however, was plagued with guilt.

 

I mention this not to make you feel bad but to prepare you for the parting and dealing with the emotions after that.  I'm betting that as soon as you reach your hotel in the USA you and your wife will want to call home to make sure he's OK.  Regular contact always helped me through my periods away from home, although it wasn't always possible.

[kingcarr21]

1 hour ago, Crinklyfox said:

I used to travel overseas for work on a fairly regular basis and leaving my children was always heartrending for me.  Thirty years on I can still see my young son sobbing his heart out as he and my wife waved goodbye to me as I left for a three week stint in China.  I felt truly awful.  However children adapt pretty quickly and soon after I'd gone he was back to normal - I, however, was plagued with guilt.

 

I mention this not to make you feel bad but to prepare you for the parting and dealing with the emotions after that.  I'm betting that as soon as you reach your hotel in the USA you and your wife will want to call home to make sure he's OK.  Regular contact always helped me through my periods away from home, although it wasn't always possible.

I used to work away from home where i would work 26 days straight then come home for 1 weekend before going away for another 26 day stint in Power Stations. I missed a fair amount of my daughter growing up and know exactly where you are coming from. She used to cry her little heart out when i left and i was miserable when i was away.

 

Luckily i had Facetime with my daughter every night. God knows how people did it years ago before internet etc was invented. 

 

Once my wife fell pregnant with Ashton i decided to stop working away. Luckily the company (Alstom) i worked for helped me get a job in their local head office which is now owned by GE. 

 

Now with Ashtons condition it was most certainly the right choice for me to finish on site when i did. Now i have a steady job with GE in planning department and my daughter is much happier now i am home everyday.

 

Will most certainly be face timing when we arrive in New York.  

[kingcarr21]

I have attached a video I received whilst I was in New York. Hope it works. Ashton finally starting to make sounds with his speech. It's not much but it's a start. I'm sure he wants to say daddy. 

 

Managed to facetime everyday whilst on New York. His face when he saw me on the phone was priceless. Loves his daddy more than mummy  

IMG_3876.mp4

[Wymsey]

It's great to see he's progressing in different areas now.

The hard work and support to him is receiving good responses. 

[stripeyfox]

23 hours ago, kingcarr21 said:

I have attached a video I received whilst I was in New York. Hope it works. Ashton finally starting to make sounds with his speech. It's not much but it's a start. I'm sure he wants to say daddy. 

 

Managed to facetime everyday whilst on New York. His face when he saw me on the phone was priceless. Loves his daddy more than mummy  

IMG_3876.mp4

Bet you missed him!

 

Did you have a good trip?

 

[kingcarr21]

28 minutes ago, stripeyfox said:

Bet you missed him!

 

Did you have a good trip?

 

Yes thanks. Was a good break. Although it wasn't much of a break with the amount of walking we did. Missed the kids like mad

 

Tonight is 'The Question of Brains' charity night at the tigers ground that me and the wife are going to. Full on dinner jacket and dickie bow  Really looking forward to it. Every penny raised goes to the nursery STEPS that Ashton goes to. Shame its on the same night as the football but i couldn't miss this charity night.

 

We are also doing a coffee morning for Ashton on 8th December as a little fundraiser for him to raise money for his physio fund. Might get 1 or 2 sessions which all helps.

 

I picked him up from nursery yesterday for the first time. Normally i'm at work but it was my birthday yesterday so i left early. His face when i walked in to pick him up bless him. So happy.

 

Did my video i uploaded to Foxestalk work? 

[stripeyfox]

2 minutes ago, kingcarr21 said:

Yes thanks. Was a good break. Although it wasn't much of a break with the amount of walking we did. Missed the kids like mad

 

Tonight is 'The Question of Brains' charity night at the tigers ground that me and the wife are going to. Full on dinner jacket and dickie bow  Really looking forward to it. Every penny raised goes to the nursery STEPS that Ashton goes to. Shame its on the same night as the football but i couldn't miss this charity night.

 

We are also doing a coffee morning for Ashton on 8th December as a little fundraiser for him to raise money for his physio fund. Might get 1 or 2 sessions which all helps.

 

I picked him up from nursery yesterday for the first time. Normally i'm at work but it was my birthday yesterday so i left early. His face when i walked in to pick him up bless him. So happy.

 

Did my video i uploaded to Foxestalk work? 

Yes mate. Couldn't view it at work (we have very extreme filters!) but viewed it on my phone. Bless him!

 

Good luck with it tonight!

 

Where abouts is the coffee morning taking place?

 

[kingcarr21]

2 minutes ago, stripeyfox said:

Yes mate. Couldn't view it at work (we have very extreme filters!) but viewed it on my phone. Bless him!

 

Good luck with it tonight!

 

Where abouts is the coffee morning taking place?

 

The coffee morning is at the Newtown Linford Village Hall.

 

I think every month they do a coffee morning for elderly so they can meet up and have a cake and a chat. A lot of the people who go dine at the Grey Lady Restaurant in Newtown Linford where my mother in law is the manageress. So my mother in law has asked if we could join in the coffee morning and bring some raffle prizes and do a raffle. They are good customers at the Grey so when they found out the manageress had a grandson with a disability they like to help with donations etc.

 

Was successful last year we did it so decided on doing it again this year

 

 

[kingcarr21]

What a night last night. Went to 'A Question of Brains' at the tigers ground to raise money for STEPS. Champagne on arrival and wine on the tables so i'm a little worse for wear. I shed a tear when i saw Ashton appear on the big screen. My little boy doing his hard work and exercises at STEPS. 

 

We raised close to £40000 for STEPS last night which was really good. Fantastic night of food, drink, entertainment, raffles, tombolas, silent auction and a quiz. 

 

Next year i will be on the stage telling Ashtons story to the audience. Looking forward to it.