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[Misc] Days Out With An Autistic Child



darkwolf666

Well-known member
Nov 8, 2015
7,650
Sittingbourne, Kent
Right. Hands up immediately. I've not been round this way much lately... and I'm not begging, honest!

Those who know me, from "before" may have an inkling why I haven't graced these boards recently. I would just like to add at this point, don't panic, we are all fit and well - as can be!

Those that do know me, know that my wife and I have been looking after a young lad, with multiple health and neurological issues. We have been striving to give him as much of life's experiences as we can - particularly in our slightly more senior years, and with our own health issues!

Anyway, to cut to the chase, I would love it if anyone could have a look, take a read of what I have added, and maybe just (hopefully) enjoy what I do and am trying to achieve...

https://www.days-out-with-an-autistic-child.co.uk/

Thank you...!

UTA
 








Harry Wilson's tackle

Harry Wilson's Tackle
NSC Patron
Oct 8, 2003
56,063
Faversham
Well done mate. I'll have a proper look at that, with the missus, when I get back from hols.

I though you were busy when you missed my tagging you when I was slagging off Sittingbourne :wink:

All the best as always.
 






darkwolf666

Well-known member
Nov 8, 2015
7,650
Sittingbourne, Kent
Well done mate. I'll have a proper look at that, with the missus, when I get back from hols.

I though you were busy when you missed my tagging you when I was slagging off Sittingbourne :wink:

All the best as always.
Slagging off Sittingbourne, how dare you Sir!

Enjoy your hols, and
We all know you're a lovely bloke who deserves the support of every one of us. You really should feel proud :thumbsup:
Thank you, very much appreciated. I am trying, in I hope a positive way, to make a difference!
 


GT49er

Well-known member
NSC Patron
Feb 1, 2009
49,171
Gloucester
Sounds like you're doing a tremendous job. There are several places my kids have enjoyed - they're a fair way from Kent, but you seem to wander far and wide. Fortunately for me, I haven't had to worry about accessibility - and I've no idea of the extent of your lad's needs, or the size, weight and maneuverability of the wheelchair, s I'll leave you to check out the websites and make the necessary enquiries. Animals and trains feature quite a lot, so, accessibility permitting, they might fit your profile of places to visit. Good luck, and best wishes.

https://www.perrygrove.co.uk/

https://www.marwell.org.uk/
 


darkwolf666

Well-known member
Nov 8, 2015
7,650
Sittingbourne, Kent
Sounds like you're doing a tremendous job. There are several places my kids have enjoyed - they're a fair way from Kent, but you seem to wander far and wide. Fortunately for me, I haven't had to worry about accessibility - and I've no idea of the extent of your lad's needs, or the size, weight and maneuverability of the wheelchair, s I'll leave you to check out the websites and make the necessary enquiries. Animals and trains feature quite a lot, so, accessibility permitting, they might fit your profile of places to visit. Good luck, and best wishes.

https://www.perrygrove.co.uk/

https://www.marwell.org.uk/
Thank you for the reply…

Our Little One has no particular mobility issues, apart from being a “runner”, with no understanding of danger, or consequences of actions, hence he is pretty much always on a wrist strap, for his security and my peace of mind. He has limited understanding and is non-verbal, but can usually make his needs known!

We have been to Noah’s Ark Zoo Farm a couple of times, as we love the West Country. We are always keen to find new places to stretch Little One physically, and mentally…
 




GT49er

Well-known member
NSC Patron
Feb 1, 2009
49,171
Gloucester
Thank you for the reply…

Our Little One has no particular mobility issues, apart from being a “runner”, with no understanding of danger, or consequences of actions, hence he is pretty much always on a wrist strap, for his security and my peace of mind. He has limited understanding and is non-verbal, but can usually make his needs known!

We have been to Noah’s Ark Zoo Farm a couple of times, as we love the West Country. We are always keen to find new places to stretch Little One physically, and mentally…
Well, if any of those help, good luck.
 


Commander

Arrogant Prat
NSC Patron
Apr 28, 2004
13,558
London
I can’t actually imagine how you cope with this. My youngest had meningitis at 8 weeks and was in critical care for 5 days. He pulled through but has some developmental delays and processing issues, but he’s doing really well. He can be incredibly frustrating sometimes, but it’s nothing compared to what you are going through here. Makes me realise how lucky we were (are) that he made it, despite the issues.

Massive respect for what you do, it must be unbelievably hard.

What is the long term term prognosis for kids with these types of challenges? It just didn’t seem to exist when I was a kid, so what happens when these kids become adults? (My guess is they probably become billionaires!?)
 


darkwolf666

Well-known member
Nov 8, 2015
7,650
Sittingbourne, Kent
I can’t actually imagine how you cope with this. My youngest had meningitis at 8 weeks and was in critical care for 5 days. He pulled through but has some developmental delays and processing issues, but he’s doing really well. He can be incredibly frustrating sometimes, but it’s nothing compared to what you are going through here. Makes me realise how lucky we were (are) that he made it, despite the issues.

Massive respect for what you do, it must be unbelievably hard.

What is the long term term prognosis for kids with these types of challenges? It just didn’t seem to exist when I was a kid, so what happens when these kids become adults? (My guess is they probably become billionaires!?)
Become billionaires 😂😂😂

What does the future hold, I don’t know! I am a pragmatist and live day by day. My wife is a little more practical and thinks of the future and how our Little One will be.
Me - “if he wants to sit on my lap when he’s 18, good luck to him” (and me)…
My wife - “yeah, but you can change his bum”… did I mention at 8 years of age he is double incontinent? 😁
 




Commander

Arrogant Prat
NSC Patron
Apr 28, 2004
13,558
London
Become billionaires 😂😂😂

What does the future hold, I don’t know! I am a pragmatist and live day by day. My wife is a little more practical and thinks of the future and how our Little One will be.
Me - “if he wants to sit on my lap when he’s 18, good luck to him” (and me)…
My wife - “yeah, but you can change his bum”… did I mention at 8 years of age he is double incontinent? 😁
Fair play to you mate.

Do they have any idea why he has the issues he has? It’s crazy how many kids have this stuff going on these days. I’m sure it wasn’t like this when we were kids.
 


darkwolf666

Well-known member
Nov 8, 2015
7,650
Sittingbourne, Kent
Fair play to you mate.

Do they have any idea why he has the issues he has? It’s crazy how many kids have this stuff going on these days. I’m sure it wasn’t like this when we were kids.
His mum drank and took drugs whilst pregnant, which probably didn’t help.
He has a chromosome condition, Distal 18q, which he inherited from her, which has left him with the following condition, amongst others…
Distal 18q
Autism
GDD
ADHD
Moderate deafness
1 kidney (small and with cysts)
Non verbal
Limited understanding (except matters BHA)

Despite all that, we love him and don’t regret one minute of the 7.5 years he has been in our care!
 


KZNSeagull

Well-known member
Nov 26, 2007
21,089
Wolsingham, County Durham
His mum drank and took drugs whilst pregnant, which probably didn’t help.
He has a chromosome condition, Distal 18q, which he inherited from her, which has left him with the following condition, amongst others…
Distal 18q
Autism
GDD
ADHD
Moderate deafness
1 kidney (small and with cysts)
Non verbal
Limited understanding (except matters BHA)

Despite all that, we love him and don’t regret one minute of the 7.5 years he has been in our care!
My eldest only has one of those (Autism) so I am in awe of you. Please keep doing what you are doing :clap:
 




darkwolf666

Well-known member
Nov 8, 2015
7,650
Sittingbourne, Kent
My eldest only has one of those (Autism) so I am in awe of you. Please keep doing what you are doing :clap:
Thank you.

We (I) have never seen what we do as a challenge. My wife finds it more difficult since her cancer diagnosis, as rightly, or wrongly, she believes her days are numbered. She sets herself goals (not that there’s much she can do about it).
Her current goal is to make 70, at which point our Little One will be 14/15ish.
I worry about his future, when we’re not here for him, briefly, then put it to the back of my mind
 


KZNSeagull

Well-known member
Nov 26, 2007
21,089
Wolsingham, County Durham
Thank you.

We (I) have never seen what we do as a challenge. My wife finds it more difficult since her cancer diagnosis, as rightly, or wrongly, she believes her days are numbered. She sets herself goals (not that there’s much she can do about it).
Her current goal is to make 70, at which point our Little One will be 14/15ish.
I worry about his future, when we’re not here for him, briefly, then put it to the back of my mind
I think all parents worry about the future for them (at least they should do anyway). At least you are giving him a happy and stable life as it is not that long ago when he would have been put away into an institution and "forgotten" (which incidentally was what my father told me to do with our son - "let the council look after him" were his words!! Different and often dreadful times.)
 


darkwolf666

Well-known member
Nov 8, 2015
7,650
Sittingbourne, Kent
I think all parents worry about the future for them (at least they should do anyway). At least you are giving him a happy and stable life as it is not that long ago when he would have been put away into an institution and "forgotten" (which incidentally was what my father told me to do with our son - "let the council look after him" were his words!! Different and often dreadful times.)
f***ing brutal, isn’t it…?
 






dazzer6666

Well-known member
NSC Patron
Mar 27, 2013
55,514
Burgess Hill
Right. Hands up immediately. I've not been round this way much lately... and I'm not begging, honest!

Those who know me, from "before" may have an inkling why I haven't graced these boards recently. I would just like to add at this point, don't panic, we are all fit and well - as can be!

Those that do know me, know that my wife and I have been looking after a young lad, with multiple health and neurological issues. We have been striving to give him as much of life's experiences as we can - particularly in our slightly more senior years, and with our own health issues!

Anyway, to cut to the chase, I would love it if anyone could have a look, take a read of what I have added, and maybe just (hopefully) enjoy what I do and am trying to achieve...

https://www.days-out-with-an-autistic-child.co.uk/

Thank you...!

UTA
Amazing stuff. I do some voluntary stuff at a local school/residential care home (Chailey Heritage for anyone who knows it) - the work, commitment and dedication I see from staff, carers and parents there like you greatly humbles me.
 


Rambo

Don't Push me
NSC Patron
Jul 8, 2003
3,998
Worthing/Vietnam
You are doing an amazing thing.

I resonate with most of it, my son is non verbal autistic, limited understanding, a runner too with no sense of danger.

He also probably has adhd and is on a keto diet for his severe epilepsy which is now under control with the diet.

We have just been on holiday and it’s been a real challenge. But he mostly enjoyed it, he loves the water.

I worry every day about his future.

I really enjoyed reading your blog, for someone to choose this life you are incredible,. Keep up the good work.
 


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