Ashtons Journey

[kingcarr21]

I thought rather than keep putting my updates in the 'How was your day' thread i would start my own topic. 

 

A quick description. My son Ashton was born 1/1/2014 and the first few weeks/months were all fine. We did notice though that it took Ashton a long time to be able to hold his own head up. (Compared to our daughter). He was developing much slower than what we had experienced with our first child. Ashton had an MRI scan which confirmed a brain condition called 'Partial ACC'. This is called Agenesis of the Corpus Callosum. 

 

The Corpus Callosum is the 'bridge' of the brain which contains Grey Matter and millions of tiny hairs which are used to transfer information from one side of the brain to the other. Ashtons number of hairs is much less than a normal humans therefore his 2 sides of his brain aren't communicating as they should be. This makes his motor skills and communication skills delayed in their development. 

 

So after much fighting with the NHS in getting a plan in place for his development things are starting to come together. Ashton has private physio alongside his NHS physio and will be starting his Nursery soon.

 

*This next part is my latest update which i was about to post in the 'how was your day thread' before i decided to do my own topic*

 

Took my son to his first swimming lesson yesterday. Not sure what to make of it as the other kids didnt have special needs so they were holding onto the side and jumping in where obviously my son cant do that. Saying that though he was put in this group instead of a special needs group as it is quieter so ultimately it is better for him to be in a 'normal' group but i still felt out of place. The teacher knows he has special needs though so has his own program but i still felt a little awkward.

 

Important week this week. He starts at Menphys nursery in 2 weeks and his teachers are doing a home visit today to see how his surroundings are at home. Then tomorrow all the professionals that are working with my son are all meeting at the nursery tomorrow (me and mummy included) to work out the next steps in his development now he is effectively starting his 'Education'. Not really sure what to expect as no professional can predetermine whats going to happen with my sons development as we don't know if he will start to crawl tomorrow, next week or never. What i do know though is Menphys will be brilliant for him. 

 

I found out that the class he is joining is 6 kids (including him) with 4 teachers. Not far off 1 to 1. My main worry was Ashton (My son who i will call by name now instead of typing 'my son') would be left alone a lot of the time in a large class as he is always a happy child and will happily sit and play with a toy all day with no fuss. Knowing he is in a small class with 4 teachers is reassuring as i know he wont just be left and 'forgotten' about. I'm looking forward to him starting as i'm very confident the work they will do with him will bring him on leaps and bounds. His private physio sessions has worked wonders for him so will continue that alongside his nursery days (2 days a week) and also a day at STEPS (conductive education). 

 

I hope people don't mind me typing these updates on here. I think it helps me to tell my story to people who i don't know so i get a balanced response rather than friends telling you the same usual stuff that everything will be ok. 

 

Below is a pic

 

Edited 12 September 2016 by kingcarr21

[Jon the Hat]

He's a cute lad!  Glad to hear there is a great plan in place, I know from your previous posts that has taken a lot of effort to get.  I am sure he will do well at nursery.

[Strokes]

Ive followed your story with interest KC, however im unable to offer any advice. You seem to be doing all loving parents can do and its brilliant how positive and strong you are. Best of luck Ashton.

[Merging Cultures]

Please do keep updating, I was actually thinking about your story the other day. It's great that, despite a fight, there is a plan and he is going to a nursery with such a good ratio. He looks like he is having fun in that photo. As I said, please do let us know how he gets on.

[Guest MattP]

As others have said do keep updating us.

[kingcarr21]

So i have just been to his Review meeting with the professionals to give his nursery an overall view of where Ashton is at and what his next steps are in his development. Went really well and i cant wait for him to start at Menphy's. I have a good feeling that this next year or so we will start to see massive improvements. Hopefully this time next year he will be able to at least walk with his walker unaided. Here's hoping

[stripeyfox]

Didn't know about any of this mate (don't really look in the How Was Your Day Thread).

 

Having lots of one on one time with the staff will be a massive help I am sure.

 

I will look forward to the updates.

 

 

 

 

[MPH]

Thanks so much for the updates. We also get private physical therapy  for our son and he is doing so well... heard so many good things about memphys and really hope he gains alot from it!!!!

[kingcarr21]

Good weekend. Had physio on Saturday and tried out a new walker which he did really well. Getting stronger everyday. Also last night he was sat on the sofa and he managed to get himself down off the sofa onto the floor. The fact he is attempting it tells me he is confident in himself that he can do it and he thinks his legs are strong enough. Massive step in the right direction 

[Crinklyfox]

The earlier you can get the correct support to a child with Special Needs the better.  My elder son had Special Needs which didn't start to manifest until he was around a year old, fortunately we were pointed in the right direction regarding support although his condition was not correctly diagnosed for some years.  When he was a young child we were concerned that his development would be limited and that he would need a lifetime of care, but the fact is that none of us know how a child will respond to the support provided and what their full potential will be.  As parents we hope for the best and sometimes fear the worst.  

 

I congratulate you for having the courage to start a post about your son, it couldn't have been the easiest thing to do but I hope there are some other posters who can share their experience and possibly expertise with you.  And of course I wish Ashton well for his future.

 

I had to strive to get the right support for my son from the time he went to Primary School onwards, but without the support he received pre-school I've convinced that his development would have been more restricted.  All children develop at different rates and in different manners depending upon their needs.  My son's development from age 11 was assisted by placement in a school for children with similar Special Needs with a good staff/children ratio.  They helped him learn to cope with his condition.  He's now in his thirties and has achieved things that most parents take for granted, but which my wife and I did not, including independent living, driving and a full time job.  In some respects he's achieved more than many of his peers without Special Needs and I am immensely proud of him.

 

 

 

 

[Beliall]

I really can't think of anything to say, so I'll echo what others said, Glad to see things are looking more optimistic, and I look forward to your updates. Wish you all the best of luck

Edited 19 September 2016 by Beliall

[kingcarr21]

16 minutes ago, Crinklyfox said:

The earlier you can get the correct support to a child with Special Needs the better.  My elder son had Special Needs which didn't start to manifest until he was around a year old, fortunately we were pointed in the right direction regarding support although his condition was not correctly diagnosed for some years.  When he was a young child we were concerned that his development would be limited and that he would need a lifetime of care, but the fact is that none of us know how a child will respond to the support provided and what their full potential will be.  As parents we hope for the best and sometimes fear the worst.  

 

I congratulate you for having the courage to start a post about your son, it couldn't have been the easiest thing to do but I hope there are some other posters who can share their experience and possibly expertise with you.  And of course I wish Ashton well for his future.

 

I had to strive to get the right support for my son from the time he went to Primary School onwards, but without the support he received pre-school I've convinced that his development would have been more restricted.  All children develop at different rates and in different manners depending upon their needs.  My son's development from age 11 was assisted by placement in a school for children with similar Special Needs with a good staff/children ratio.  They helped him learn to cope with his condition.  He's now in his thirties and has achieved things that most parents take for granted, but which my wife and I did not, including independent living, driving and a full time job.  In some respects he's achieved more than many of his peers without Special Needs and I am immensely proud of him.

 

 

 

 

I also believe that the nursery that he starts next week will be critical in his development. Really starting to believe that he will come on leaps and bounds. The staff/child ratio is 4 teachers 6 kids in his class so he will be well supported. Sounds like it did the world of good for your son and hearing his story that he has been able to achieve great things and lead a 'normal' life is very reassuring to me. Thanks for sharing that. 

[Thracian]

It's humbling that you should share such a personal experience with us fans - he seems like one of the team already.

 

It helps enormously to talk your experiences through as I found on here when my beautiful grandaughter lost her mum at birth and we later learned that she had to cope with the challenge of a brittle bone condition which has resulted in her knowing many of the doctors and nurses at the Birmingham childrens hospital by name - and many of the procedures as if she were on the staff.

 

From my experience as a market trader, where people often unburden many concerns, I found that problems are the norm rather than the exception and each are a challenge to be dealt with in a positive way and with an optimistic outlook.

 

The paralympics are an international example of the way even the most complex challenges can inspire the most exceptionally imaginative solutions and that there's really no limit to the marvel of human ingenuity and determination when tuned into "help" mode.

 

I'm sure that will be no less the case with the support you get from people on here and look forward to being a part of that support and to sharing and, hopefully, being warmed by the story as it unfolds with all its twists and turns. 

 

If it's any comfort, the now five-year story of my grandaughters progress, while punctuated by all sorts of setbacks from time to time - has been entirely uplifting and to see the way she served my customers at Stratford one particular day,  was one of the loveliest memories of my entire life.

 

I hope and trust you'll enjoy the same special moments too. My very best to you all.             

[kingcarr21]

Was in hospital again Friday. Struggling for breath again so took him straight hospital. Was admitted but i only spent 1 night in hospital this time. Think we caught the chest infection at an early stage so a few hours on oxygen and antibiotics he was good as gold. Still has a cough now but much happier in himself.

 

Big day tomorrow. Ashton has his first day at his nursery. This is a whole new beginning. I am very hopeful of him progressing much quicker once he is there. Will keep you informed how he gets on. 

[stripeyfox]

Good luck for his first day at nursery and glad the hospital visit was brief.

 

Post often in here mate - it is probably good for your own sanity to do so, and know that we are reading and wishing you and the little fella all the best.

 

Peace

 

Edited 26 September 2016 by stripeyfox

[SystonFox]

KingCarr, you're doing what any loving parent would do and I think it's incredible. Ashton seems like a great kid and you seem like a top bloke. Full respect to you for loving your son. IMO dads don't get enough glory the mums generally hog all that but it's the love us dad's show that also help shape them into the people they grow up to be. I enjoy reading about Ashton in the other thread and I think it's great you've started this up too. 

 

I wish you and him all the best, here's hoping he goes well at nursery. Much love. SF

[GaelicFox]

Your doing a fantastic job KC , never stop fighting 

 

our daughter is deaf and my wife who works at the royal was amazing she never stopped fighting to get our little girl the most amazing help and plans and now she is on a fantastic pathway to a happy life , Realy all down to her mum never giving up , I was bamboozled and didn't question the "experts" enough ! 

 

I totally admire you mate you really have stepped forward for him and he is lucky to have you. 

 

Keep fighting ! 

 

Ashton is one of our own now  , really look forward to your updates now KC 

[Vlad the Fox]

Glad you started this thread as I don't usually look in the 'how's your day' thread, I'll follow this with interest. The one thing that comes across is your strength and positivity and this will only ever be good for Ashton, and it seems he's showing signs of your positivity. Best wishes to you all.

[stripeyfox]

7 hours ago, GaelicFox said:

Your doing a fantastic job KC , never stop fighting 

 

our daughter is deaf and my wife who works at the royal was amazing she never stopped fighting to get our little girl the most amazing help and plans and now she is on a fantastic pathway to a happy life , Realy all down to her mum never giving up , I was bamboozled and didn't question the "experts" enough ! 

 

I totally admire you mate you really have stepped forward for him and he is lucky to have you. 

 

Keep fighting ! 

 

Ashton is one of our own now  , really look forward to your updates now KC 

Yeah, I got one of them too! 

[GaelicFox]

37 minutes ago, stripeyfox said:

Yeah, I got one of them too! 

They earn there money it's a tough tough place to work 

[kingcarr21]

Thanks everyone but my wife is the one who deserves the praise. She really does a lot for him. Me working full time means i don't get to go to many appointments so she is the one who takes him here there and everywhere whilst then working 20 hours a week (cleaner at Next head office 6pm-10pm) 

 

Was weird seeing Ashton this morning as he is normally still asleep when i leave but now with his nursery i had to wake him up. Crazy day really having Ashton's first day at nursery and Leicesters first Champions League Home game. Cant wait for Ashton to be able to kick a football. I still hold a little hope that one day i will be able to take him to his first match at the KP. With his sensory problems though i fear the noise might be too much. May need to go to shit again so we have no atmosphere  

 

On top of all this i have a soon to be 10 year old who is excited to have a pink hummer for her birthday party. She has gone proper chav recently taking selfies on her ipad whilst doing the peace sign and pouting her lips. I feel like i have failed at parenting with her  

[kingcarr21]

Ashtons first day at nursery went really well. All the teachers love him. He was very settled and enjoyed playing with the toys. Will monitor how he goes over the next few weeks and hopefully will start to see improvements in his speech and mobility.

 

The photo he doesn't look too amused but that's his chair he will use at nursery. He only goes Monday and Tuesday with STEPS on a Thursday so a day off today to play with his own toys and watch BabyTV all day   

 

 

[Strokes]

I think he will flourish at nursery kingcarr. It will do Mum the world of good too, getting a bit of a break whilst knowing his needs are being cared for. 

[adam]

Glad his first day went well. All the best to you and your lad. 

[kingcarr21]

Thanks guys. Means a lot to see so many people interested in how my lad is developing. Right now he is rolling around whilst watching his favourite tv channel. I can tell his personality is starting to come through and he is getting stronger all the time. Nursery, STEPS (google it, conductive education which imo should be standard in this country), private physio, NHS physio, swimming and play groups are all good ways to get his exercise and improve his social skills. It took a long time but we finally feel like he has all the help he needs to get him that step closer to a normal life

Edited 28 September 2016 by kingcarr21