Ashtons Journey

[kingcarr21]

Still plodding along, Ashton really starting to show negative emotion, throwing strops when he doesn't want to do anything. As annoying as it is (pulling my hair and pulling glasses off my face) It is ultimately a good thing that he is expressing himself more and more.

 

Ashton has his 2nd tooth loose now, going to try and get it before he swallows it like his first tooth. Determined to at least keep one of his baby teeth .

 

Go on a cruise In under 2 weeks. Cant wait to take him in the pool and to the beach when we dock.

 

OT and PT are still as useless as ever. Getting really fed up with some of the supposed 'services' they are meant to provide. 

 

Going to Devon next month for Ashton's 6th assessment with the specialist doctor. He said he would be really surprised if Ashton wasn't walking when we last saw him 7 months ago. He still isn't walking unaided but he is as close as he will ever get before taking the plunge. Just needs to grow in confidence which will only come in time. Just waiting for him to want to do it so all we can do Is keep encouraging him.

 

So I feel like I am repeating myself, still going and hoping.

 

 

[kingcarr21]

Came back from our cruise on Sunday. Had a great time. Ashton loved all the food and just generally relaxing and waking up when he wants.

 

Not much else to report. He is still showing tantrums. Smacking people and pulling hair when he gets upset. Really hard to control as he just has no way of understanding that it isn't acceptable to hit. He is still overall a very happy boy though. 

 

Going to Devon on Tuesday for his appointment with the Specialist. Will get a new program of activities to do with Ashton to stimulate his brain further.

 

Ashton has started to come out with some other noises. Still no words and his mobility is still at the same point. Walking really well with his walker so getting stronger everyday.

 

Currently fighting to get laterals for his chair to stop him from leaning. Been 4 months now and still they cant get the correct pads for his chair. They have been out twice to attach them to his chair to no avail. Honestly I don't know where to start with the NHS. Need to go to hospital, more times than not you get a great service. When it comes to scheduled appointments and services for the disabled. Nothing short of embarrassing. 

 

Roll on Disney in the new year. Just trying to arrange for a temporary disabled badge for Ashton when we go. Which is fun and games. Nobody seems to want to answer the phone.

 

Took a quick look back at this thread and my first post. Over 3 years ago now. Scary how time has gone so quick.

[kingcarr21]

Landed back from Florida on Thursday. Had a great time around Disney, Universal etc. Took Ashton to Discovery Cove to swim with dolphins which he loved. Many memories that I will cherish.

 

Back to school today. He has had the last month off so was hard on all of us to get up this morning

 

Ashton seems to have shot up a bit recently. He is a bit taller and heavier, so it's really down to me to do almost everything for Ashton as he is too strong and heavy for the wife. The sooner he walks the better. He is so close and yet so far. Still adore him. 

 

Got his new Trike before we went away which will help him gain more strength in his legs. So that's good. Just need to keep soldiering on I guess.

 

[stripeyfox]

24 minutes ago, kingcarr21 said:

Landed back from Florida on Thursday. Had a great time around Disney, Universal etc. Took Ashton to Discovery Cove to swim with dolphins which he loved. Many memories that I will cherish.

 

Back to school today. He has had the last month off so was hard on all of us to get up this morning

 

Ashton seems to have shot up a bit recently. He is a bit taller and heavier, so it's really down to me to do almost everything for Ashton as he is too strong and heavy for the wife. The sooner he walks the better. He is so close and yet so far. Still adore him. 

 

Got his new Trike before we went away which will help him gain more strength in his legs. So that's good. Just need to keep soldiering on I guess.

 

I'm not sure who is smiling the most here, Ashton or the Dolphin!

 

Looks brilliant mate, the dolphin experience is great - we did it in Cuba some years ago.

 

I guess the slow progress must be frustrating, but it is progress, and he has come a very long way in these past couple of years

 

[Strokes]

1 hour ago, kingcarr21 said:

Landed back from Florida on Thursday. Had a great time around Disney, Universal etc. Took Ashton to Discovery Cove to swim with dolphins which he loved. Many memories that I will cherish.

 

Back to school today. He has had the last month off so was hard on all of us to get up this morning

 

Ashton seems to have shot up a bit recently. He is a bit taller and heavier, so it's really down to me to do almost everything for Ashton as he is too strong and heavy for the wife. The sooner he walks the better. He is so close and yet so far. Still adore him. 

 

Got his new Trike before we went away which will help him gain more strength in his legs. So that's good. Just need to keep soldiering on I guess.

 

You should be really proud of yourselves for the amazing dedication you put into your family. It’s inspirational stuff.

[ozleicester]

You and Ashton just bring joy  

[kingcarr21]

Been an upsetting week. We received a letter on Tuesday with test results from X-Rays that Ashton had in January on his hips. Ashton has developed a condition called Coxa Valgas in both sides of his hips. This is where the angle of his ball/socket joint to his leg has increased which has caused his ball and socket to separate by 50% on both sides. This may be due to him naturally growing up. 

 

This is most probably the reason why Ashton is reluctant to take that unaided step. It maybe uncomfortable on his hips. Not that he has ever shown signs of discomfort.

 

The letter states that his ball and socket are teardrop shaped, which suggest that they were in place correctly and they have got worse as time has gone on. So now i'm wondering if all the physio that we have done has actually had an adverse affect on him. He used to sit in a 'W' shape a lot when he was younger which has probably been another cause of this.

 

The letter said that he would have a review in 6 months . Yeah good one. No way am I waiting 6 months just for him to be monitored. Why is there no urgency. No information provided to me and my wife? She is in bits, finding this out by letter is bullshit.

 

I've just called and managed to get an appointment for 23rd March. A lot better than July. It maybe something that can be operated on but at his age right now im not sure that's an option. Probably why they just want to monitor things atm. What I need to know though is if his current physio plan at school is still suitable knowing his hips are bad.

 

I knew this day would come, when we find out there is something else wrong with Ashton. After his diagnosis we have been very lucky in his general health. Various check ups have all come back fine, Eyes, ears, heart, spine etc. I always had it in my head that puberty would be a testing time. This has surprised me though since Ashton has never complained about his hips.

 

Other than that he is enjoying his half term. Sleeping lots and watching his favourite programs  

[kingcarr21]

Went to the hospital yesterday to understand what the letter about his hips means to Ashton. Looks very likely that he will have surgery. Once the ball and socket are separated by at least 50% (So more out than in) then it needs to be fixed asap as it leads onto spinal problems. Ashton is already at 50% so will have another X Ray in the summer. If it has got worse then he will have surgery on both hips. 

 

Depending how he gets on with the surgery on the first side they may then operate the other side at the same time. Doing both together though makes it more likely he will be in intensive care and more prone to chest infections which he isn't great with. So will be interesting to see what happens.

 

The Doctor was really good at explaining the situation which is all we wanted. 

 

So onto this Covid 19 stuff. Ashton wasn't given a place at his school as at the time my job wasn't classed as a key worker (which it now is). I told the school I would rather keep him at home anyway and let another child have his spot. Ashton is relatively easy to look after and I work from home anyway. I know there are parents who would be desperate to keep their child in school. They would be better looked after at school anyway. So he is happy at home watching tv and playing with his toys. Need to be extra careful with him as this virus and its respiratory problems it brings will be really bad for Ashton and his weakened immune system. So house bound for all of us.

 

We are very lucky in the sense that my job is unaffected as I work from home anyway. So carry on as normal with kids at home instead of school. At least the wife has stopped going out and spending unnecessary money. Every cloud I guess  

[ozleicester]

On 24/03/2020 at 18:58, kingcarr21 said:

Went to the hospital yesterday to understand what the letter about his hips means to Ashton. Looks very likely that he will have surgery. Once the ball and socket are separated by at least 50% (So more out than in) then it needs to be fixed asap as it leads onto spinal problems. Ashton is already at 50% so will have another X Ray in the summer. If it has got worse then he will have surgery on both hips. 

 

Depending how he gets on with the surgery on the first side they may then operate the other side at the same time. Doing both together though makes it more likely he will be in intensive care and more prone to chest infections which he isn't great with. So will be interesting to see what happens.

 

The Doctor was really good at explaining the situation which is all we wanted. 

 

So onto this Covid 19 stuff. Ashton wasn't given a place at his school as at the time my job wasn't classed as a key worker (which it now is). I told the school I would rather keep him at home anyway and let another child have his spot. Ashton is relatively easy to look after and I work from home anyway. I know there are parents who would be desperate to keep their child in school. They would be better looked after at school anyway. So he is happy at home watching tv and playing with his toys. Need to be extra careful with him as this virus and its respiratory problems it brings will be really bad for Ashton and his weakened immune system. So house bound for all of us.

 

We are very lucky in the sense that my job is unaffected as I work from home anyway. So carry on as normal with kids at home instead of school. At least the wife has stopped going out and spending unnecessary money. Every cloud I guess  

So sorry to hear this mate, damn it must be tough for you all.

Congrats to all of you for all you do.

I hope the ops are successful

[kingcarr21]

26 minutes ago, ozleicester said:

So sorry to hear this mate, damn it must be tough for you all.

Congrats to all of you for all you do.

I hope the ops are successful

Thanks for the message, appreciate the support I get off here. Always nice to get non biased messages of support.

 

So we are well into this Lockdown. Ashton has had a few weeks off from school and has loved every minute. Getting up when he wants and not having to rush around getting ready for school. He has ate, had afternoon naps, done lots of exercising and using his specialist equipment. Mixed in with plenty of his favorite cartoons.

 

He had a wobbly tooth for a long time which finally came out and once again he swallowed it in his sleep. So that's 3 teeth now he has swallowed and we have been unable to retrieve. I also attempted a haircut on him, took 2 people to pin him down and me going at his locks . Safe to say he currently looks like an abandoned child with his hair and front tooth missing  

 

One problem we do have atm are the length of his eye lashes. He always gets comments from women on how perfect his eye lashes are. Long and curl up naturally. Its what women pay for fake eye lashes. Problem is though on occasion when Ashton rubs his eyes he ends up tucking his eye lashes inside his eye lids. They don't give him any hassle but his eyes do go red. So to try and pin down a 6 year old with no sense of his own strength, force his eyes open (which he shuts really tight) and try to drag his eye lashes out is a tough task and traumatic for Ashton. He went to an eye appointment at the hospital which we asked if there is a service where he can have his lashes trimmed, as he would have to be put to sleep in order to do it. The nurse said they wouldn't do it, so need to investigate how we are going to tackle the problem, as Ashton will no way sit perfectly still whilst a pair of scissors are by his eyes.

 

So at the moment im still working as normal, ive worked from home for about 2 years now so this lockdown hasn't affected me at all. Only difference being the kids are at home instead of school. So each day is the same. We carry on and await what happens with regards to his hips later in the year. Just waiting for the appointment.

[kingcarr21]

So not much to report, only that 

 

ASHTON JUST TOOK HIS FIRST UNAIDED STEP !!!

 

We have been able to recently get him to stand up unaided more often. In the shower he would put both hands under the shower to play with the water. Letting go of the rail.

 

So this morning we put his shoes on and managed to get him to stand unaided watching TV. He stood for 7 whole minutes. Longest he has ever done. He normally freaks out and collapses in a heap when he doesn't hold anything. 

 

So after the 7 minutes we got him to stand unaided again and encouraged him to walk towards mum. Which with some persuasion he actually took some steps towards her. What our daughter did before her 1st birthday Ashton has finally achieved just before he turns 6 and a half.

 

We have had a bottle of champagne saved for 5 years waiting for the day he took a step. I think that will be cracked open tonight

 

So proud

[ozleicester]

7 minutes ago, kingcarr21 said:

So not much to report, only that 

 

ASHTON JUST TOOK HIS FIRST UNAIDED STEP !!!

 

We have been able to recently get him to stand up unaided more often. In the shower he would put both hands under the shower to play with the water. Letting go of the rail.

 

So this morning we put his shoes on and managed to get him to stand unaided watching TV. He stood for 7 whole minutes. Longest he has ever done. He normally freaks out and collapses in a heap when he doesn't hold anything. 

 

So after the 7 minutes we got him to stand unaided again and encouraged him to walk towards mum. Which with some persuasion he actually took some steps towards her. What our daughter did before her 1st birthday Ashton has finally achieved just before he turns 6 and a half.

 

We have had a bottle of champagne saved for 5 years waiting for the day he took a step. I think that will be cracked open tonight

 

So proud

Fanbloodytastic,!!!!!!!!!!!!!!!!!

Thanks for sharing... got a smile on my face tonight

[FoxesDeb]

1 hour ago, kingcarr21 said:

So not much to report, only that 

 

ASHTON JUST TOOK HIS FIRST UNAIDED STEP !!!

 

We have been able to recently get him to stand up unaided more often. In the shower he would put both hands under the shower to play with the water. Letting go of the rail.

 

So this morning we put his shoes on and managed to get him to stand unaided watching TV. He stood for 7 whole minutes. Longest he has ever done. He normally freaks out and collapses in a heap when he doesn't hold anything. 

 

So after the 7 minutes we got him to stand unaided again and encouraged him to walk towards mum. Which with some persuasion he actually took some steps towards her. What our daughter did before her 1st birthday Ashton has finally achieved just before he turns 6 and a half.

 

We have had a bottle of champagne saved for 5 years waiting for the day he took a step. I think that will be cracked open tonight

 

So proud

Well done Ashton  

[kingcarr21]

Not much to update. Took Ashton for his follow up X-Ray on his hips and they are still the same as before. So at the moment there is no need for an operation on his hips. Which is good news.

 

Just had a weekend away at Tattershall. Took Ashton swimming and played on the beach which he loves. He just keeps picking up the sand and letting it run through his fingers. Good Sensory play for him.

 

Still not much developed on the walking side. Still focusing mainly on standing unaided which he is doing really well. 

 

Looking forward to him getting back to school and back to normality. Got a long weekend in Centre Parcs before school though.

[kingcarr21]

Been an eventful couple of weeks. Ashton had a fall whilst at school. He was using his walker whilst 'supervised' and somehow he fell and got a nasty bump on his head. Get to the school and ask how it happened. Their response, ' We have no idea'. Yea great supervision. This school is plummeting in my estimations and i'm on the verge of moving him out of this school. 

 

Ashton has always had a problem with fluid intake. He doesn't seem to drink enough at school. I've always pushed for the teachers to give him a drink to which they reply that they always try to get him to drink and he doesn't want it. This is most likely down to the environment he is in. (Move him to a quieter area and get him to drink)

 

In saying that the school, on a regular basis, forget to put his drink back into his bag for the journey home. If they realized the importance of his drink it would be the first thing to go in his bag. In fact I think its the only thing that comes out of his bag. The fact they forget it regularly tells me it isn't at the forefront of their minds regarding Ashton. Therefore they aren't trying hard enough to get him to drink.

 

We've had Ashton's EHCP for review and to make comments. There is a section asking if we want to move school. I've left it blank for now whilst me and the wife discuss the implications of this. This is now the second fall Ashton has had in 12 months, landing on the same side of his head so now he still has a lump. Probably wont go down for months/years. Both occasions they haven't an idea how it happened. I've got a good idea, Ashton has turned his body 180 degrees to try and move the walker backwards but the brake doesn't allow this. Therefore his body weight on the walker has made him lose balance. Somebody supervising would easily stop him as its not a fast action for him to turn around.

 

Its exactly what I was worried about before he started school, that because there are other kids that are 'harder' to look after than Ashton he gets set up and left alone whilst teachers focus are more on the more difficult kids.

 

Any other sort of accident in the near future and that's it, ill keep him home and refuse to send him.

 

In other news our holiday to Zante, leaving 13th October is most likely being cancelled due to it being on the quarantine list. We were in TUI yesterday looking at hotels in Turkey when the news came through on Sky News that Turkey is also on the quarantine list. So now it looks like Rhodes is the only destination we can go to or cancel and get a refund. I need a holiday, work has been mental since Lockdown started and I need a break from the laptop. Will be gutted if Rhodes ends up on the quarantine list.

 

Lets see what happens

[stripeyfox]

yeah it sounds like he should more closely supervised especially as he is just getting that confidence to move around!
 

I think the focus on the difficult kids is prevelant in all schools. In my son's school there is an absolute little shit who is incredibly disruptive (throws chairs at teachers etc) and all of the teachers attention is on keeping him in line!
 

 

[kingcarr21]

So yesterday The School forgot to send his drink AGAIN and didn't even write in his book. So ive left a note to say that its not good enough.

 

Just had a call from his teacher to discuss my note. They are now fully aware that if he is to have another accident, like when in his walker under 1:1 supervision, I will be pulling him out of that school. The standards are slipping since he first went to school.

 

His teacher also said ' When I am in the classroom the kids are supervised 100%.' 

 

Yeah that's great but what about when you are off on a Thursday? That comment does not breed confidence in me.

 

They did a risk assessment and now Ashton has to wear a helmet when using his walker. I told her that this is not the solution. The risk should be eliminated in the first place, and to do that is to actually supervise him and do their job properly. Ashton doesn't wear a helmet at home when using his walker why on Earth should he wear one at school.

 

Getting pissed off just typing this. My boy is so innocent and much easier to look after than the other kids that doesn't mean he should be getting less treatment than the other kids.

 

Schools walking on thin ice which his teacher is well aware of. So lets hope that the situation improves quickly.

 

 

[Crinklyfox]

4 minutes ago, kingcarr21 said:

So yesterday The School forgot to send his drink AGAIN and didn't even write in his book. So ive left a note to say that its not good enough.

 

Just had a call from his teacher to discuss my note. They are now fully aware that if he is to have another accident, like when in his walker under 1:1 supervision, I will be pulling him out of that school. The standards are slipping since he first went to school.

 

His teacher also said ' When I am in the classroom the kids are supervised 100%.' 

 

Yeah that's great but what about when you are off on a Thursday? That comment does not breed confidence in me.

 

They did a risk assessment and now Ashton has to wear a helmet when using his walker. I told her that this is not the solution. The risk should be eliminated in the first place, and to do that is to actually supervise him and do their job properly. Ashton doesn't wear a helmet at home when using his walker why on Earth should he wear one at school.

 

Getting pissed off just typing this. My boy is so innocent and much easier to look after than the other kids that doesn't mean he should be getting less treatment than the other kids.

 

Schools walking on thin ice which his teacher is well aware of. So lets hope that the situation improves quickly.

 

 

I always read your posts on this thread but rarely add anything to the discussion; however I've felt the pain of your last two posts so just want to advise a little of my own experience for your consideration. 

 

As you may be aware I also had a child with special needs, as I posted on the first page.  He spent some years in a mainstream school with additional support, however although the support was well intended it didn't meet his needs in my view.  It was only after I managed to get him into a special school set up to deal with children with his condition that he improved.  He was nine years old at the time and because it was specialist there were very few schools of this type in the UK it was weekly boarding.  It broke my heart to take him there because it meant depriving him of his home environment, however he settled down quickly and the most important benefit was that he began to thrive with the correct support.  I am convinced that without it he would not have achieved the independence and success he found in his adult life.

 

I'm aware that it is government policy to integrate children with additional needs into mainstream school environments.  I'm convinced that this is not best for the child in many cases.  I spent some time as a Trustee for a charity which supported children with special educational needs in my local area in Sussex.  We employed NVQ3 qualified practitioners to support the special needs children, without whom we would have been less able to meet their needs.

[kingcarr21]

Back from our 2 week holiday to Zante. We all had a great time. Ashton, as usual, enjoyed all the food and relaxing by the pool watching his Ipad.

 

Now we are back and he is back into the school routine.

 

We have just been to pick up his new wheelchair. He has been in a specialized buggy the last few years but now is outgrowing it. First impressions are meh. It needs extended handles as the chair is simply to low for myself to use. I am literally bending over in order to push him ( I am only 5'10'')

 

He looks a bit too snug in it also. He does need to be snug with his hip problems but he looks quite restricted. Will have to see how he goes, may need further adjustment.

 

There are extendable handles you can get so I will be looking into them. 

 

Other than that the chair isn't too bad. Its smooth and light and the wheels detach if required. So im sure it will be a good chair once we get through the teething problems.

 

Also ordered Ashton new boots as he has now outgrown his current ones.

 

Nothing much else to report. Gone to school in his Halloween costume today so looks funny  

[oakman]

Been reading your updates over the years and just wondering how your young lad’s doing?

 

I know it’s a bit weird that a random poster on a football forum is asking but I’ve been wondering how he’s been getting on. Hope all’s well.

[kingcarr21]

On 20/01/2021 at 22:12, oakman said:

Been reading your updates over the years and just wondering how your young lad’s doing?

 

I know it’s a bit weird that a random poster on a football forum is asking but I’ve been wondering how he’s been getting on. Hope all’s well.

Only just thought to myself i havent posted in this thread for a while. Completely missed your question so im really sorry about that. Its very kind of you to be thinking about Ashton.

 

Ashton is pretty much the same as before. We had a private appointment at Nuffield to have another Xray done on his hips to see if they have gotten worse. Find out the results on Friday.

 

We have moved into our new house. Been here 3 months tomorrow. Ashton is loving having his much bigger bedroom.

 

Ill try and keep on top of this thread and post with more frequent updates

[stripeyfox]

always good to hear an update mate. Hope your're all doing well. 

 

[kingcarr21]

Been far too long since an update.

 

Ashton moved up in school year, not entirely sure why though as he really hasnt progressed much. I think the school just do it to give us a sense of achievement. They say he can load food on his spoon now which i am still yet to see evidence of. School still hasnt really gotten any better, they still forget to write what he has done in his book and forget to send stuff home with him (his drink mainly, which infuriates me)

 

I am taking him to an assessment later for a new type of physiotherapy. £105 for an hour and a half, honestly if you want to earn a good living become a physiotherapist.

 

Been in our new house 7 months today. Ashton is still getting used to having the dog, he can get a little upset just from seeing the dog walk around with a toy in his mouth but he will get used to him, i hope.

 

Not much else really going on, daughter just turned 15 so she is hitting the fun age  

[kingcarr21]

Update time - Still moving along with no real updates to be made. Ashton is still not interested in walking. Im still not keen on the school he is at.

 

Ashton is still the happy little boy as always, apart from when the dog stresses him out .

 

In the process of getting Ashton a new car seat, trying to get funding from a charity as its £2400. So annoying when equipment is so expensive.

 

Got Ashton's EHCP review next week with the school. Looking forward to going and telling the school they arent fit for purpose and im looking to transfer to another school. Lets see what drama that causes

 

 

[kingcarr21]

So we have started Ashton on a new programme of therapy that includes using a new stander. This stander gives him minimal support with a rocking feature. I am hoping that Ashton gets the sense of stability when facing the rocking motion and help to trigger his brain to tell him that he can walk. Everyone is convinced he is capable of walking independently but we need to convince Ashton to push himself and give it a go without the fear of falling.

 

Its been such a long process but we believe we have got him strong enough to do it. I just want to keep building up his core strength and put him in situations where he is having to correct his balance. Im sure he will be walking at some point. 

 

We have a new car seat on order along with a new wheelchair and we recently celebrated our 1 year anniversary of moving into our house. Cant believe how fast the time has gone.

 

Took Ashton to the cinema for the first time in years. Watched Sonic 2. Ashton is obsessed with his Ipad but he watched most of the film before wanting his Ipad. Very proud of him. Just set up another little fundraiser to raise funds for his new treatment as well which is going well.

 

On Friday we are going to Monkey World, he loves monkeys so will see how he gets on when they are roaming around him