Ashtons Journey

[ozleicester]

On 13/04/2022 at 22:42, kingcarr21 said:

Just set up another little fundraiser to raise funds for his new treatment as well which is going well

Link?

[kingcarr21]

Time for an update.

 

So Ashton had ANOTHER accident at school. We got a call on Friday that he had been whacked on the head with a musical instrument. We rushed there to find him with a big bandage on his head. He was still happy in himself and luckily on inspection of the cut on top of his head it wasn't as bad as we thought. Still blood but nothing that required gluing or stitches. Simply took him home and kept an eye on it whilst it dried out. He's gone back to school today.

 

Now the wife wasn't too amused but he was simply in the wrong place. Another student was getting upset and he lashed out with instrument in hand and unintentionally hit Ashton. So although we aren't too happy with the school, which we voiced our concerns in Ashton's last EHCP meeting. I said to the wife that it wouldn't be fair to blame this accident entirely on the school. Its not ideal but at the end of the day accidents do happen.

 

Honestly though we aren't far away from simply keeping Ashton home and moving him to another school. Im more level headed than the wife but even i am at the point where i wonder if its time to move. Though i always think will it improve by moving, what happens when he has his first accident and new school? Difficult to decide.

 

Last day of school on Thursday and my wife and daughter are going to Bulgaria for a week next week. So just me and Ashton for a whole week. Boys holiday  

 

[kingcarr21]

So today is Ashton's first day back at school. Lets see if he manages to go accident free. As if one more happens that i consider is the school's fault then i will take him out. He seemed quite happy to go back however the rest of this week he wont be going as i am away in London and its me who gets him ready for school.

 

We have also booked an assessor to go to his school in mid September to see if they believe he has SPD (Sensory Processing Disorder) which he absolutely has. having Ashton have an official diagnosis will potentially help us gain access to further services. 

 

His Standing has come along really well. The facebook page of The Movement Centre posted a video showing Ashton's progress, ill try and find the link to it for you all to see.

 

His independent standing is coming along really well. Still not confident to take unaided steps but he is getting stronger all the time.

 

My wife has applied for a job at Ashton's school. Which would be great as then she can take him and bring him how. Saving him getting up so early in order to go on school bus. Also will be home quicker.

 

 

[kingcarr21]

https://fb.watch/fdWKgCmyjR/

 

Hope this works. This is a video of Ashton. Me and the wife using his iPad as encouragement

 

[The Blur]

On 30/08/2022 at 16:49, kingcarr21 said:

https://fb.watch/fdWKgCmyjR/

 

Hope this works. This is a video of Ashton. Me and the wife using his iPad as encouragement

 

 

Fantastic stuff.   I cannot began to imagine all hard work that has went into this- keep going Ashton!

[kingcarr21]

Been far too long since I did an update.

 

Ashton getting more and more active. Wanting to get off the sofa and move around the house. He still can't walk without holding a hand but the fact he wants to get up and move is very encouraging.

 

Unfortunately at the moment he seems to have an infection in his big toe nails. So keeping him off from school so his cream can do it's magic. 

 

He is obsessed with Tipping Point. We have managed to arrange with the TV studio to give Ashton a tour and see a recording of tipping point. Maybe even press the button. We will also meet Ben Shepherd. He will be so excited.

 

 

 

[Costock_Fox]

12 hours ago, kingcarr21 said:

Been far too long since I did an update.

 

Ashton getting more and more active. Wanting to get off the sofa and move around the house. He still can't walk without holding a hand but the fact he wants to get up and move is very encouraging.

 

Unfortunately at the moment he seems to have an infection in his big toe nails. So keeping him off from school so his cream can do it's magic. 

 

He is obsessed with Tipping Point. We have managed to arrange with the TV studio to give Ashton a tour and see a recording of tipping point. Maybe even press the button. We will also meet Ben Shepherd. He will be so excited.

 

 

 

The lad has good taste.

[kingcarr21]

Just woke up in Bristol. Getting ready to go for Venezuelan breakfast before heading to the TV studio to see Tipping Point. 

 

The guy who works for the charity has been amazing. Also turns out he is a Leicester fan who sits close to my season ticket seat. So we all ended up in walkabout last night to watch the match. Don't think he expected Ashton to be out also

[kingcarr21]

[Facecloth]

1 hour ago, kingcarr21 said:

Has he won the £10k jackpot? 

[kingcarr21]

3 hours ago, Facecloth said:

Has he won the £10k jackpot? 

We put the jackpot counter in and managed to get it out. Unfortunately it was just for fun lol. 

 

They did give us a signed jackpot counter to take home so a great prize

[ozleicester]

Tahnks for sharing.. my goodness how much has Ashton grown up

[kingcarr21]

44 minutes ago, ozleicester said:

Tahnks for sharing.. my goodness how much has Ashton grown up

Tell me about it. 9 years old now so getting big. Still skinny considering the food he puts away  

[kingcarr21]

So we have now been put onto the waiting list for Hip surgery. The ball and socket on the left side hasnt got any better or worse however we (and the surgeon) believe if we do not intervene it will only get worse as he hits puberty. So now is the best time to do the operation. 4 month wait so we will see if January is the month.

 

I took Ashton to a place called Bendrigg a couple of weeks ago. A place that specializes in fun activities to people with additional needs. We did canoeing, Cycling, Rock Climbing, Zip Lining and Archery. A fun long weekend. Taking him again in December for a xmas themed weekend.

 

School are still pissing me off. The level of incompetence is crazy. Its just small things like forgetting to send his drink home or not completing his food diary. Then after swimming we got a random bag of clothes sent home with him. Obviously belong to someone else. Everyday there is something that makes me think the staff just do not care. 

 

A big problem is Ashton eating. He has lost weight in the last year to the point we now have a dietician. I put this down to him not wanting his lunch at school because of the environment he is in. So we have said to the school we will pull him out of school if he refuses to eat as we cant have him weak for his operation. We will monitor him leading up to Christmas and he if doesnt improve i will keep him home.

 

Never a dull moment in the life of Ashton haha

[ozleicester]

On 13/09/2023 at 21:21, kingcarr21 said:

I took Ashton to a place called Bendrigg a couple of weeks ago. A place that specializes in fun activities to people with additional needs. We did canoeing, Cycling, Rock Climbing, Zip Lining and Archery. A fun long weekend. Taking him again in December for a xmas themed weekend.

Sounds great... hope you all had a ball.

 

On 13/09/2023 at 21:21, kingcarr21 said:

So we have said to the school we will pull him out of school if he refuses to eat as we cant have him weak for his operation. We will monitor him leading up to Christmas and he if doesnt improve i will keep him home.

yep, if they cant/wont care... youll have too

[kingcarr21]

So after more continuous bullshit from his school we have now pulled him out. 

 

I am in the process of writing up a formal complaint to the school. That can open the door for Ofsted to become involved.

 

All i want now is to have a nice Christmas and start proceedings to getting Ashton into a different school. I can't deal with sending him back to Birkett House.

 

 

[kingcarr21]

Feels like 2024 is going to be a crazy year. 

 

So I submitted the formal complaint to Ashton's school and informed them of our decision to not send him back. He seems much happier at home where I can ensure he gets his meals and snacks down him. He is putting weight back on which is good news. Now we wait for his operation date.

 

I am also starting the process to potentially move house. Posted on the house thread, lots to think about.

 

Got Ashton EHCP to sort out, still haven't seen his latest plan which is a joke.

 

We also need to find him another school. We have an idea of where to send him just need to make the formal request at Ashton's EHCP meeting on 24th.

 

There really is no rest when you have a child with additional needs. There is always a battle to be had.

[Jon the Hat]

37 minutes ago, kingcarr21 said:

Feels like 2024 is going to be a crazy year. 

 

So I submitted the formal complaint to Ashton's school and informed them of our decision to not send him back. He seems much happier at home where I can ensure he gets his meals and snacks down him. He is putting weight back on which is good news. Now we wait for his operation date.

 

I am also starting the process to potentially move house. Posted on the house thread, lots to think about.

 

Got Ashton EHCP to sort out, still haven't seen his latest plan which is a joke.

 

We also need to find him another school. We have an idea of where to send him just need to make the formal request at Ashton's EHCP meeting on 24th.

 

There really is no rest when you have a child with additional needs. There is always a battle to be had.

Good luck with it all mate, I reckon Ashton hit the Jackpot with you as his Dad, and I am sure his Mum is going a great job too!

[kingcarr21]

8 hours ago, Jon the Hat said:

Good luck with it all mate, I reckon Ashton hit the Jackpot with you as his Dad, and I am sure his Mum is going a great job too!

Well obviously im the better parent. Just dont tell her that  

[Trav Le Bleu]

44 minutes ago, kingcarr21 said:

Well obviously im the better parent. Just dont tell her that  

So tempted to start a second account called Mrs kingcarr21.

[Tommy G]

On 09/01/2024 at 01:00, kingcarr21 said:

Feels like 2024 is going to be a crazy year. 

 

So I submitted the formal complaint to Ashton's school and informed them of our decision to not send him back. He seems much happier at home where I can ensure he gets his meals and snacks down him. He is putting weight back on which is good news. Now we wait for his operation date.

 

I am also starting the process to potentially move house. Posted on the house thread, lots to think about.

 

Got Ashton EHCP to sort out, still haven't seen his latest plan which is a joke.

 

We also need to find him another school. We have an idea of where to send him just need to make the formal request at Ashton's EHCP meeting on 24th.

 

There really is no rest when you have a child with additional needs. There is always a battle to be had.

My son is at Dorothy Goodman in Hinckley and can’t recommend it enough. We got his EHCP finalised when he was 3, I know exactly the pain you are going through with that - I agree it’s always a battle, I had to threaten the authority that I would take them to tribunal. Just keep everything written down, date stamped etc. 

 

if you push them hard enough they back down in the end, If you want any help PM me. Same with sourcing the next school, places are so limited it’s such an unnecessary challenge. 
 

Best of luck and thanks for taking the courage to document your story. 

[kingcarr21]

So today is the day Ashton is having hip surgery. I have just this second said goodbye to him as they took him into theatre.

 

Never easy seeing one of your children go into theatre. 

 

Reading back through this thread it's crazy how far he has come

[Trav Le Bleu]

3 hours ago, kingcarr21 said:

So today is the day Ashton is having hip surgery. I have just this second said goodbye to him as they took him into theatre.

 

Never easy seeing one of your children go into theatre. 

 

Reading back through this thread it's crazy how far he has come

All the best mate, I'm sure he's in good hands.

[stripeyfox]

5 hours ago, kingcarr21 said:

So today is the day Ashton is having hip surgery. I have just this second said goodbye to him as they took him into theatre.

 

Never easy seeing one of your children go into theatre. 

 

Reading back through this thread it's crazy how far he has come

He will be fine, he's in good hands - let us know how he gets on

 

[kingcarr21]

Surgery all done. Hips now in a cast for 6 weeks so will be fun and games now. Spend a few days in hospital before we take him home in an ambulance and he is then bed bound until his cast comes off. Thanks for the well wishes all x