Any help would be so very appreciated.

[neogenisis]

Hi all as some of you know I have a Mollie, most dont know that I also have an Autistic 4 year old called Ted or as Mollie calls him Tedboy. Ted is a non verbal Autistic and as you can imagine the challenges are great, the chief of these for our family right now is sleeping.
Ted has only slept through the night a handful of times in the 4 years he has been alive, he wakes up and is inconsolable, he always wakes up around the same time/s everynight. We have people on it but the powers that be simply tell us sleep issues are an Autistic thing. When he does sleep he has to be in an enclosed space he gets very upset if he doesnt feel safe, we have managed to retro-fit his original cot and that has been holding out for a good while now, but unfortunately tonight he has basically destroyed it.
We have tried him 3 times in a normal bed and it has gone so badly each and every time and always ends with him standing at his stair gate screaming and becoming so dis-regulated he has to be taken out and calmed down. No one has managed to sleep well at all, and with a little girl in heart failure we have to make sure she gets sleep.
We are in communication with Family Fund but the waiting list is currently at 14 weeks and speaking to other families FF are helping fewer and fewer families.
Ill be honest I'm scared as he wont let anyone else deal with him but me, I am normally very good at going without sleep, but this is going into car crash territory.
Specialist beds are so expensive I am not really sure how companies expect your normal person to afford one.
We as a family dont ever ask for help, but now with this and the impact it WILL have in the coming days/weeks I need to see if my fellow Spurs family can help us? I know we are all in a bad mood and dont know whether we are coming or going, and the cost of living is fucking us all over, but literally anything would help.

Thankyou.

Help us buy a new bed for tedboy, organisiert von Chelsea Marshall

***EDIT*** wonderful beautiful people we are blown away by your generos… Chelsea Marshall braucht deine Unterstützung für Help us buy a new bed for tedboy

www.gofundme.com

 

[McFlash]

So you need like a giant cot type thing? What sort of measurements do you need?
I work at a charity shop but it's a charity for brain injured children. Let me know what you're after and I'll ask around the other shops and the trust to see if I can find anything.
I may not be able to help but I'll give it a go at finding something cheap and useful.
I can hopefully tap into a network of people who work with children suffering from all sorts of brain injuries, so with any luck I can at the very least get some pointers.

I'm based in West Sussex but the charity is based in Tadworth.
Let me know what you need and I'll start asking around tomorrow mate.
As I say, no guarantees but I'll try for you guys.

 

[McFlash]

So you need like a giant cot type thing? What sort of measurements do you need?
I work at a charity shop but it's a charity for brain injured children. Let me know what you're after and I'll ask around the other shops and the trust to see if I can find anything.
I may not be able to help but I'll give it a go at finding something cheap and useful.
I can hopefully tap into a network of people who work with children suffering from all sorts of brain injuries, so with any luck I can at the very least get some pointers.

I'm based in West Sussex but the charity is based in Tadworth.
Let me know what you need and I'll start asking around tomorrow mate.
As I say, no guarantees but I'll try for you guys.

Sadly, I'm struggling too with this financial shit we're all going through but if I can help in any other way, I will. X

 

[Dunc2610]

Hi all as some of you know I have a Mollie, most dont know that I also have an Autistic 4 year old called Ted or as Mollie calls him Tedboy. Ted is a non verbal Autistic and as you can imagine the challenges are great, the chief of these for our family right now is sleeping.
Ted has only slept through the night a handful of times in the 4 years he has been alive, he wakes up and is inconsolable, he always wakes up around the same time/s everynight. We have people on it but the powers that be simply tell us sleep issues are an Autistic thing. When he does sleep he has to be in an enclosed space he gets very upset if he doesnt feel safe, we have managed to retro-fit his original cot and that has been holding out for a good while now, but unfortunately tonight he has basically destroyed it.
We have tried him 3 times in a normal bed and it has gone so badly each and every time and always ends with him standing at his stair gate screaming and becoming so dis-regulated he has to be taken out and calmed down. No one has managed to sleep well at all, and with a little girl in heart failure we have to make sure she gets sleep.
We are in communication with Family Fund but the waiting list is currently at 14 weeks and speaking to other families FF are helping fewer and fewer families.
Ill be honest I'm scared as he wont let anyone else deal with him but me, I am normally very good at going without sleep, but this is going into car crash territory.
Specialist beds are so expensive I am not really sure how companies expect your normal person to afford one.
We as a family dont ever ask for help, but now with this and the impact it WILL have in the coming days/weeks I need to see if my fellow Spurs family can help us? I know we are all in a bad mood and dont know whether we are coming or going, and the cost of living is fucking us all over, but literally anything would help.

Thankyou.

Help us buy a new bed for tedboy, organisiert von Chelsea Marshall

***EDIT*** wonderful beautiful people we are blown away by your generos… Chelsea Marshall braucht deine Unterstützung für Help us buy a new bed for tedboy

www.gofundme.com

Donated, my best friends soon is autistic, and knowing the troubles she has with him sleeping at times (and he's 13), I can eperthise with how hard it is for you! I how you reach your target and it brings your boy(and yourselves) and little respite!

 

[McFlash]

Fuck it mate, just chucked you a fiver. Wish I could afford more but hey, it's a baby stumble in the right direction.

As I say, let me know what you're after and I'll see if I can find cheaper options for you.
You and your family deserve some good stuff to come your way.

 

[neogenisis]

Thanks guys, really appreciate the donations. Ill look into dimensions. It needs to be tankproof and heavy so he cant move it. Its a really weird situation with him as when he goes to bed he is against it and kicks off, but then when he settles in he doesn't want to come out. But without the enclosure of the bars/sides he cant cope at all.

 

[McFlash]

@Rob @Archibald&Crooks
Is there any way of pinning this post somewhere or something, so it gets the attention it deserves?
SC have been fantastic with support of their fellows in the past, so it would be good to get this seen more.
X

 

[soflapaul]

Your one of our own. donated. Best of luck in a tough moment in life.

 

[Rob]

@Rob @Archibald&Crooks
Is there any way of pinning this post somewhere or something, so it gets the attention it deserves?
SC have been fantastic with support of their fellows in the past, so it would be good to get this seen more.
X

Done for a day or two.

 

[neogenisis]

Done for a day or two.

Thakns Rob you lovely lovely man. xx

 

[McFlash]

Done for a day or two.

Thanks mate.
We're good at this stuff in here and after all they've been through, @neogenisis and his fam could do with our support.
Thank you again boss.

 

[Dannyspur]

My daughter’s best friend has two severely autistic sons and I have another friend with autistic twins. Having seen their struggles, I am happy to help you. Donation done

 

[Dwallace]

Hi all as some of you know I have a Mollie, most dont know that I also have an Autistic 4 year old called Ted or as Mollie calls him Tedboy. Ted is a non verbal Autistic and as you can imagine the challenges are great, the chief of these for our family right now is sleeping.
Ted has only slept through the night a handful of times in the 4 years he has been alive, he wakes up and is inconsolable, he always wakes up around the same time/s everynight. We have people on it but the powers that be simply tell us sleep issues are an Autistic thing. When he does sleep he has to be in an enclosed space he gets very upset if he doesnt feel safe, we have managed to retro-fit his original cot and that has been holding out for a good while now, but unfortunately tonight he has basically destroyed it.
We have tried him 3 times in a normal bed and it has gone so badly each and every time and always ends with him standing at his stair gate screaming and becoming so dis-regulated he has to be taken out and calmed down. No one has managed to sleep well at all, and with a little girl in heart failure we have to make sure she gets sleep.
We are in communication with Family Fund but the waiting list is currently at 14 weeks and speaking to other families FF are helping fewer and fewer families.
Ill be honest I'm scared as he wont let anyone else deal with him but me, I am normally very good at going without sleep, but this is going into car crash territory.
Specialist beds are so expensive I am not really sure how companies expect your normal person to afford one.
We as a family dont ever ask for help, but now with this and the impact it WILL have in the coming days/weeks I need to see if my fellow Spurs family can help us? I know we are all in a bad mood and dont know whether we are coming or going, and the cost of living is fucking us all over, but literally anything would help.

Thankyou.

Help us buy a new bed for tedboy, organisiert von Chelsea Marshall

***EDIT*** wonderful beautiful people we are blown away by your generos… Chelsea Marshall braucht deine Unterstützung für Help us buy a new bed for tedboy

www.gofundme.com

Thanks for sharing that Neogenesis that so touching. Do you have camera in his room so you can watch him at night or perhaps a microphone so you can hear him breathing? Maybe this will help keep your mind at ease that he doesn't do anything to harm himself in the early hours of the morning.

 

[neogenisis]

Pic for attention =)






Thankyou so much for the very kind donations everyone =)

 

[McFlash]

Pic for attention =)

View attachment 125688

It may not always feel like it but you have two very beautiful and special kids man. Much love to you and your other half because you're both doing a great job in incredibly hard circumstances.
Massive respect and love to you all.

I remember how hard it was when my youngest spent times in hospital because of her heart and that's nothing to what you guys have been through.
As hard as it is, you should be incredibly proud of yourselves. X

 

[juste5boys]

I don't know if you have seen them but you can get pop up safe space beds that go on normal beds to give an enclosed space. They might be worth looking at as a temporary solution whilst you try to get funding for a long-term solution.
I also found that moving my autistic son into a box room was a massive help when trying to get him to transition from a cot to a bed.

Good luck with it all, I know how difficult it is meeting the needs of two children with different medical conditions x

 

[neogenisis]

I don't know if you have seen them but you can get pop up safe space beds that go on normal beds to give an enclosed space. They might be worth looking at as a temporary solution whilst you try to get funding for a long-term solution.
I also found that moving my autistic son into a box room was a massive help when trying to get him to transition from a cot to a bed.

Good luck with it all, I know how difficult it is meeting the needs of two children with different medical conditions x

Looking at them now. It needs to be strong is the only issue, as he doesnt like the initial going down phase.

 

[neogenisis]

It may not always feel like it but you have two very beautiful and special kids man. Much love to you and your other half because you're both doing a great job in incredibly hard circumstances.
Massive respect and love to you all.

I remember how hard it was when my youngest spent times in hospital because of her heart and that's nothing to what you guys have been through.
As hard as it is, you should be incredibly proud of yourselves. X

Thanks mate, that means alot. Mollie is *easier* I guess and she can talk to us and communicate and while her condition without help will be fatal we know where we are at all times.
Ted cant tell us anything outside of the limited pecs cards he will use. He had a stomach bug at Xmas, and would take himself into the dining room and curl up in pain, my heart still breaks over that. Teds needs are arguable more complex than his sisters just in a different way.

 

[juste5boys]

Looking at them now. It needs to be strong is the only issue, as he doesnt like the initial going down phase.

Whatabout a Montessori style playpen bed? Could that work?

 

[neogenisis]

Whatabout a Montessori style playpen bed? Could that work?

Mrs said she has investigated that one. Its not tall enough. He has swiss army legs.