Any help would be so very appreciated.
- Thread starter neogenisis
- Start date
freeeki
Arsehole.
- Aug 5, 2008
- 11,840
- 69,468
@neogenisis
You may have explored this route already - apologies if so, I’ve not had time to read through the full thread - however I’ve had involvement over the years with a charity called MedEquip4Kids who are based up here in Manchester.
They specialise in providing various bits of equipment and medical devices for children with a range of physical and mental health conditions, as well as those with learning disabilities.
May be worth reaching out to them to see if they’re able to either assist with a grant, or to point you in the direction of organisations who can.
Best of luck x
You may have explored this route already - apologies if so, I’ve not had time to read through the full thread - however I’ve had involvement over the years with a charity called MedEquip4Kids who are based up here in Manchester.
They specialise in providing various bits of equipment and medical devices for children with a range of physical and mental health conditions, as well as those with learning disabilities.
May be worth reaching out to them to see if they’re able to either assist with a grant, or to point you in the direction of organisations who can.
Best of luck x
-Afri-Coy-
Well-Known Member
- Jun 26, 2012
- 5,854
- 18,619
Donated, @Archibald&Crooks will have to wait until next month to get his probe allowance from me but this is for a good cause 
Your story is inspirational to us all and I genuinely hope everything keeps falling into place for you and your family.
Your story is inspirational to us all and I genuinely hope everything keeps falling into place for you and your family.
neogenisis
*Gensy*
- Jun 27, 2006
- 5,927
- 13,450
- Thread starter
- #66
We have explored a few routes tbh, some people more helpful than others and all have massive lead times. Its not we are impatient, I along with Ted havnt slept through the night for as long as I can remember, sometimes he is up once, sometimes 3, if he is unwell it will be every 2/3 hours. What I do know 2 nights in is that in an hour or so I am going to bed to sleep for the day so I can do the nights. We just need to get a bed ordered and on its way. We have already spoken to a carpenter who has agreed to make the bed Ted needs and its within budget so we are very happy. Life is tough but without his bed Ted is already finding it alot tougher, if only he understood it was him that broke his old one....................
Croftwoodspurs
Well-Known Member
- Aug 15, 2012
- 359
- 651
just donated, hope this helps towards you all getting the sleep which is vital.
neogenisis
*Gensy*
- Jun 27, 2006
- 5,927
- 13,450
- Thread starter
- #71
Thanks again all! Small update, the media have been in touch about our story. Not sure what we are doing tbh.
none of us do.....
neogenisis
*Gensy*
- Jun 27, 2006
- 5,927
- 13,450
- Thread starter
- #73
Fair point, well made.
we all just fake it. it is just a question of who is willing to admit it
We've all heard the saying " This too shall pass." And it is often difficult when one is in the midst of the storm to have any sense of its truth. But as the storm subsides, one of the more comforting thoughts that tends to help remind you in the future to believe in that is the idea that, " Coincidence is God's way of staying anonymous."
Whether it is god or fate, looking back at all the things that fell into place as you weather the storm now tends to strengthen your faith that you can weather future storms.
Not sure if this helps in any way but felt compelled to share it with you. You probably already know that there is a community that cares about what you and your family are going through. Good luck but also make your own good luck! I sincerely hope this didn't come off is too preachy
Whether it is god or fate, looking back at all the things that fell into place as you weather the storm now tends to strengthen your faith that you can weather future storms.
Not sure if this helps in any way but felt compelled to share it with you. You probably already know that there is a community that cares about what you and your family are going through. Good luck but also make your own good luck! I sincerely hope this didn't come off is too preachy
Last edited:
neogenisis
*Gensy*
- Jun 27, 2006
- 5,927
- 13,450
- Thread starter
- #76
I really appreciate those words. This community is something really special, I know its sometimes fractured, at each others throats and mostly argumentative, but all that comes from caring about the same thing, our Football Club. This forum just *being* here has helped through many dark times as its a fixed thing for me, I can come on and read absolute crap that makes me laugh, cry and care. We may be a shithouse of a football club right now, but the fans are stunning people and if the media do get me onscreen I will be telling them the same thing!
It's pretty amazing to think that anonymously typing on a keyboard can create such bonds between people. Is there value to you and your family in sharing your story? I do have a close friend at GMTV that is often looking for stories.
neogenisis
*Gensy*
- Jun 27, 2006
- 5,927
- 13,450
- Thread starter
- #78
As we have a Mollie and a Ted we know many families who are in the same position with the same medical issues and we see them going on holidays, taking receipt of iPads aplenty and unboxing new this and that. It really is not something we have ever done and wanted to do. These people define there kids by there illness's and medical issues and then get *stuff* I have read many pieces of our friends on newspapers and magazines and I dunno, its not us I dont think. We were asked to be in Channel 4 documentary about limited life children and children on life support, we turned it down.
Depends on why we would be doing it.
wrd
Well-Known Member
- Aug 22, 2014
- 13,603
- 58,005
I've just been catching up on the thread and credit to you Neogenisis, the way you speak about your son makes me very happy because that child has a parent who has good intuition, I can imagine it's overwhelming at times and it can feel like you don't know what you're doing but some of your comments tell me that you should trust your instincts.
I wish I could help you because I feel I understand these things through experience, as @soflapaul said though and I agree with this, we're all just guessing and I have no qualification to say my opinion are worth anything but I feel I can say a couple of things that might lead to some progress. First of all you said about him feeling unsafe, I think that is spot on and so I can give you something to explore on this front, it's called: Retained Primitive Reflexes, basically we are given these reflexes as a child to help us defend ourselves between the ages of 0-4 months and also to help us when we're given birth to. For some these reflexes stay intact and they're simple to integrate properly for a child if you're aware of their existence, there's plenty of specialist to work with on this. Took me a lifetime to find and takes me two minutes to explain them
The next thing you said was about him being Non-Verbal. I've come to realise in the last few weeks that, we communicate with ourselves through a taught language and that our nature is non-verbal. I'm telling you this because I want you to see that it means that your son actually has incredible sensory processing power and it's overwhelming for him at times currently, probably explains the night issues to be fair when there's a lack of sensory information. I just want you to know that I appreciate it's difficult now and it can be terrifying as it's not the way we're taught or how we're "meant" to be, but with the right guidance and understanding, your son will have some tremendous capabilities, just needs to grow into them. Now my best guess would be that if you resolve the retained reflexes, the sensory overload may ease up. Hopefully the bed issues gets resolved first but If you go down the path of exploring this, let me know. Happy to link information but I'm fascinated by this stuff so if you ever want to discuss potential ideas with a stranger let me know.
I wish I could help you because I feel I understand these things through experience, as @soflapaul said though and I agree with this, we're all just guessing and I have no qualification to say my opinion are worth anything but I feel I can say a couple of things that might lead to some progress. First of all you said about him feeling unsafe, I think that is spot on and so I can give you something to explore on this front, it's called: Retained Primitive Reflexes, basically we are given these reflexes as a child to help us defend ourselves between the ages of 0-4 months and also to help us when we're given birth to. For some these reflexes stay intact and they're simple to integrate properly for a child if you're aware of their existence, there's plenty of specialist to work with on this. Took me a lifetime to find and takes me two minutes to explain them
The next thing you said was about him being Non-Verbal. I've come to realise in the last few weeks that, we communicate with ourselves through a taught language and that our nature is non-verbal. I'm telling you this because I want you to see that it means that your son actually has incredible sensory processing power and it's overwhelming for him at times currently, probably explains the night issues to be fair when there's a lack of sensory information. I just want you to know that I appreciate it's difficult now and it can be terrifying as it's not the way we're taught or how we're "meant" to be, but with the right guidance and understanding, your son will have some tremendous capabilities, just needs to grow into them. Now my best guess would be that if you resolve the retained reflexes, the sensory overload may ease up. Hopefully the bed issues gets resolved first but If you go down the path of exploring this, let me know. Happy to link information but I'm fascinated by this stuff so if you ever want to discuss potential ideas with a stranger let me know.
Last edited:
neogenisis
*Gensy*
- Jun 27, 2006
- 5,927
- 13,450
- Thread starter
- #80
Morning all, really tough last night. Ted threw his mattress out of his bedroom then took his stairgate off the wall by running into it at full pelt, he hurt himself and my partner. We have requested the funds to be withdrawn from GoFundMe and are waiting for a call from his Paediatrician as he is getting very upset and frustrated now.
