Help for Riley
Donation protected
Hi there, my son is 8, he suffers with autism, and ADHD, sensory processing disorder, ODD, meltdowns/physical or emotional outbursts, severe anxiety and learning difficulties. He has a lot to contend with. He has had lots of assessments and after a lot of research and advice we have decided our only way forward as a family with riley is with a special friend for him, to calm him, distract him and to also keep him safe as he hurts himself on purpose and is very impulsive which isn't good when out and about. We have chosen our service dog people they are called autism life dogs who will specifically train Rileys dog to his individual problems and needs. However the cost is £20,000 with ourselves having to supply £8,500. We have 3 other children, aged 6,4,and 19m and the youngest also has complex needs and is under Great Ormand street. He is tube fed straight to his bowel as he has an unsafe swallow meaning things go to his lungs.
He has spent a lot of time in hospital meaning I've had to stay with him and dad has had to give up work to help out and look after the other 3 if we are admitted which is quite regularly. So...I have a just giving page which I've been adding every spare penny to, also I have been fundraising by going to local business's and asking for a donation from them in order for some advertisement from me on our just giving page and social media. That made £200 (I also had painted my face as pudsy bear in my home village and had to attend 2 serious appointments that day still fully made up) so I am trying hard. My sister and I have been frantically drawing and colouring and framing pictures to sell at a different fares and fetes, with other home made items also, bottles with fairy lights, candle holders and stocking fillers all hand made so we really are trying but we need the help now. Riley is such hard work on a daily basis. He is at times physically dangerous towards his siblings and verbally aggressive towards us. During an episode He throws things, shouts kicks and bangs walls and will take things he's done out on his siblings. Life is miserable and this dog is the only light at the end of our tunnel right now. Rileys anxieties are escalating daily to the point he cannot cope with every day life. He spends a lot of time worrying about stuff that will never happen. "What if I wasn't born?" He asks me sobbing! How can I answer that without dismissing his anguish over the thought! An autism life dog would be such good therapy for times like these. We have spent money on so much equipment recommended to help but he gets fed up within a day or maybe 2 or they simply don't work. He loves my sisters dog that loves to fetch so the autism life team can make that part of the training as he would do that for hours. It's excercises for him and the dog. We have thought it through so much but I can't see us reaching our target fund for a couple of years and we need the help now. Before he's bigger and the problems becomes worse. He climbs on roofs in the garden on sheds etc and no matter how many times we've told him not to and explained the dangers he will still do it, the dog will alert us to things like this. It could save his life quite literally. Please help us
Anxiously living on egg shells
Shelley whitehouse
(Rileys mum)
https://www.justgiving.com/crowdfunding/shelley-whitehouse-4





"My biggest wish is for all my problems to go away and for a normal brain like everyone else"; Riley's description of battling with Autism, Sensory processing disorder, severe childhood anxiety, learning difficulties and ADHD.

my sisters words-
Given the fact that I'm the writer (read: 'gobby') one in the family, it's fallen to me to tell you #rileyroostory. This is the context for our current fundraising drive to give Riley an Autism Life dog and I hope will explain what we are trying to acheive......... This page is the official base for the fundraising campaign but my sister has already set up a fundraising page at:
https://www.justgiving.com/crowdfunding/shelley-whitehouse-4
If you can spare a pound or two please think about donating to a cause that's close to home. My sister and her family are struggling daily to cope with Riley and this is a proactive way they can do something to change all of their lives for the better. I am so proud of what they have acheived even in the last few days - photos to follow! - they have reached 17% of their target on justgiving so far and local businesses have been donating to the pot in the last two days on top of this.
My handsome, sensitive, clever nephew Riley was born on 29th August 2009 by emergency caesarean section. My sister battled severe pre-eclampsia during her pregnancy and when Riley was delivered he weighed a miniscule 4lb 9oz; he was taken straight off to NICU and had a rough first few months at the end of which he was discharged home well, but tiny. The first grandchild in the family (and my first nephew) he was immediately doted on. He was a happy, smiling, hungry baby and although his Dad was sadly not up to the job, my sister - with a lot of help from our mum - did a sterling job of starting out on her parenting journey.
For the first year or so, Riley didn't seem to be any different to any other child. Apart from recurrent chest and respiratory problems (including pneumonia) that were explained away as being linked to his condition at birth, he seemed 'normal'. He was always fiercely independant, and very advanced for his age in terms of speech; he hit all of his developmental milestones in a more than timely manner.
Things began to change most markedly when he went to nursery and then on to primary school; without a diagnosis, it seemed he was often labelled the 'naughty' child. At times it was difficult to see past his emotional instabilty and outbursts of frustration to the gentle, sensitive soul underneath; even his mummy and stepdad found it increasingly difficult to understand his needs and the reasons for his inability to connect 'appropriately' with his peers and behave in socially 'normal' ways. Art therapy helped him initially - but the allocation of hours soon ran out.
As with any child who is 'disabled' or has additional needs, life with Riley is at best challenging and at worst heart wrenching, but the good days teach us all a little something about being better human beings in general. Notwithstanding, for his family those first five years without any suggestion of a diagnosis became a tailspin of trying to 'deal with' Riley. A constant battle to understand 'what we did wrong'. No baby is handed over at birth with an instruction manual (wouldn't life be so much easier if they were!) and like so many of us parents, Riley's mum and stepdad don't have specialist qualifications. They didn't know what was happening or why life was so tough for Riley. He was ecstatic as each sibling in turn came home from the hospital, gentle and sweet to his 'babies' - but when they got older and started arguing back, not sharing, snatching, all the normal sibling rivalry became too much for Riley and he struggles to cope with them - he just doesn't understand the way their brains work, much as we don't understand completely how an 'autistic' brain works.
Confused, scared and with rapidly diminshing self esteem, Riley began to fall behind his peers in school, and struggled to maintain 'normal' friendships - not for Riley the standard play dates little boys pester their parents for constantly at the school gates. He yearns for his own space and cannot bear for anyone to be in his room, even his parents are on strict invite only terms to this day. He continues to develop obsessive/compulsive traits - he can tell if someone has been in his room, even if they haven't touched a thing - and depends on his parents to give him some sort of stablity amongst the chaos of life as the oldest of four children.
Riley's family moved to Redbourn two years ago and soon obtained a place at a more local and therefore convenient school. Luckily for Riley, staff quickly recognised the additional support and assesment needed. Things happened quickly from here on out. Specialists were called in, Paedeatrician referrals made, medications prescribed, physiotheraphy and sensory therapy routines and regimes drawn up. Again, as anyone who knows anything about bringing up a child with 'additional needs' their differences from their peers become more marked the older they get.
At first, even I have to admit I was sceptical about Riley's diagnosis - surely it wasn't anything beyond a bit of behavioural dysfunction that supernanny couldn't fix? Lately, however, it has become progressively more impossible to deny the fact that Riley has indeed been diagnosed correctly with Autism as wellas ADHD, global learning delay, sensory impairment and severe anxiety. Unfortunately he is also an Arsenal fan, but there's not a lot we can do about that.......In all seriousness, it is impossible to desctibe the challenges Riley, his parents and siblings face every single day - how his anxiety cripples him, how badly he feels about himself, how the medications they have trialled (and discontinued because they dull his spark or worse, give him severely debilitating panic attacks or cause bed wetting) affect the entire family. Riley thrives on one to one adult attention but simply cannot be left alone with other children - children are wonderfully tolerant when they want to be. They are resilient and resourceful and adaptable, however, they also aren't psychologists and can't fully understand Riley. Situations quickly escalate and without adult supervision can even become dangerous.
Whilst Riley's two younger sisters are well, his younger brother, who recently turned one, has a host of as (yet undiagnosed) gastric disabilties. He is tube fed constantly via a catheter that is passed through his nose, bypassing the stomach into his intestines and is likely to need surgery to improve his quality of life fairly soon. Both Mum and Dad have had to give up work to care for their boys and suffice to say, there are going to be a hell of a lot more challenges to face in the not so distant future.
I once read that 'the future is a strange and distant land'; I cannot imagine it would ever be more so than for a family hit with a diagnosis like this. We know that there will be help out there for Riley - the family have requested and are attempting to navigate the obstacles of getting support from health and social care. The local community have begun to rally, offering tips, advice, support, resources and most recently, sponsorship and help with fundraising (big shout out to the Redbourn local businesses!). While social services will offer some support, as will acquiring SENCO support at school and NHS therapy, services are stretched to breaking point and children like Riley don't just 'cope' better, they truly thrive with the benefit of additional support. The kind that the NHS and social services are just physically unable to provide for every child like Riley (though there is no doubt they want to) and which literally changes lives.....
Sensory OT/Riley's team of specialists have recommended lots of equipment which would help Riley with his sensory issues - the struggles with physical touch and sensation that cripple him on a daily basis and seem to get worse every day. The family have chipped in to purchase the affordable items but many of the recommended resources are far beyond the financial capability of the immediate family, who exist on carer's allowance. Since creating a justgiving page and approaching local businesses for support, as well as making us all exceptionally proud of her, my sister Shelley has managed to obtain offers for some of the necessary equipment.
What Riley's family are really hoping for, above all else, is to raise the £8,500 needed to fund an Autism Life Dog - a specially trained dog to help Riley with his social and sensory needs, to help him bridge the gap and live a 'normal' life as much as possible. Above all, like every single other person on the planet, Riley needs a friend. His own friend. Where would we be without those special friends who keep us going through the toughest parts of life, who lift us up and help us through and stand by us when we need a helping hand? Some of us are lucky enough to still have friendships we formed in childhood - myself included. I do not know where I would be without those childhood friends. Riley, however, does not have the ability to make friends like most children. An Autism life dog becomes a best friend for children like Riley; they show autistic kids how to navigate the world and make it less frightening, becoming a friend who won't fall out with Riley or question him because of his additional needs; who won't ask the impossible 'normal' social etiquette from Riley. There is a reason dog is man's best friend - a dog doesn't ask you to be anything other than who you are - he will accept you for you. An autism life dog will help Riley to accept who he is, and share his best and worst moments in life. He (or she) will bolster his faltering self esteem and stand by him through thick and thin. It's no secret that having animals around is good for us; science has shown again and again that there are a multitude of health related benefits in having pets. For Riley, it isn't just the associated reduced risk of hypertension or cardiac disease that would change his life; his autism life dog would make his life meaningful and positive again and keep it that way. Above all, the autism life dog would keep our boy smiling, and that's something we don't see enough of these days.
Thank you for reading. I know it's a long one and we are bombarded by altruistic posts on social media these days but #rileyroostory is one that is very close to my heart as well as my home - and charity starts at home, as they say. Don't forget to donate if you can at
https://www.justgiving.com/crowdfunding/shelley-whitehouse-4
If you can't spare a donation at this point please share this page - every share will help him get closer to his new best bud!
and look out for our craft and upcycling sales - watch this space!
N x
He has spent a lot of time in hospital meaning I've had to stay with him and dad has had to give up work to help out and look after the other 3 if we are admitted which is quite regularly. So...I have a just giving page which I've been adding every spare penny to, also I have been fundraising by going to local business's and asking for a donation from them in order for some advertisement from me on our just giving page and social media. That made £200 (I also had painted my face as pudsy bear in my home village and had to attend 2 serious appointments that day still fully made up) so I am trying hard. My sister and I have been frantically drawing and colouring and framing pictures to sell at a different fares and fetes, with other home made items also, bottles with fairy lights, candle holders and stocking fillers all hand made so we really are trying but we need the help now. Riley is such hard work on a daily basis. He is at times physically dangerous towards his siblings and verbally aggressive towards us. During an episode He throws things, shouts kicks and bangs walls and will take things he's done out on his siblings. Life is miserable and this dog is the only light at the end of our tunnel right now. Rileys anxieties are escalating daily to the point he cannot cope with every day life. He spends a lot of time worrying about stuff that will never happen. "What if I wasn't born?" He asks me sobbing! How can I answer that without dismissing his anguish over the thought! An autism life dog would be such good therapy for times like these. We have spent money on so much equipment recommended to help but he gets fed up within a day or maybe 2 or they simply don't work. He loves my sisters dog that loves to fetch so the autism life team can make that part of the training as he would do that for hours. It's excercises for him and the dog. We have thought it through so much but I can't see us reaching our target fund for a couple of years and we need the help now. Before he's bigger and the problems becomes worse. He climbs on roofs in the garden on sheds etc and no matter how many times we've told him not to and explained the dangers he will still do it, the dog will alert us to things like this. It could save his life quite literally. Please help us
Anxiously living on egg shells
Shelley whitehouse
(Rileys mum)
https://www.justgiving.com/crowdfunding/shelley-whitehouse-4
"My biggest wish is for all my problems to go away and for a normal brain like everyone else"; Riley's description of battling with Autism, Sensory processing disorder, severe childhood anxiety, learning difficulties and ADHD.
my sisters words-
Given the fact that I'm the writer (read: 'gobby') one in the family, it's fallen to me to tell you #rileyroostory. This is the context for our current fundraising drive to give Riley an Autism Life dog and I hope will explain what we are trying to acheive......... This page is the official base for the fundraising campaign but my sister has already set up a fundraising page at:
https://www.justgiving.com/crowdfunding/shelley-whitehouse-4
If you can spare a pound or two please think about donating to a cause that's close to home. My sister and her family are struggling daily to cope with Riley and this is a proactive way they can do something to change all of their lives for the better. I am so proud of what they have acheived even in the last few days - photos to follow! - they have reached 17% of their target on justgiving so far and local businesses have been donating to the pot in the last two days on top of this.
My handsome, sensitive, clever nephew Riley was born on 29th August 2009 by emergency caesarean section. My sister battled severe pre-eclampsia during her pregnancy and when Riley was delivered he weighed a miniscule 4lb 9oz; he was taken straight off to NICU and had a rough first few months at the end of which he was discharged home well, but tiny. The first grandchild in the family (and my first nephew) he was immediately doted on. He was a happy, smiling, hungry baby and although his Dad was sadly not up to the job, my sister - with a lot of help from our mum - did a sterling job of starting out on her parenting journey.
For the first year or so, Riley didn't seem to be any different to any other child. Apart from recurrent chest and respiratory problems (including pneumonia) that were explained away as being linked to his condition at birth, he seemed 'normal'. He was always fiercely independant, and very advanced for his age in terms of speech; he hit all of his developmental milestones in a more than timely manner.
Things began to change most markedly when he went to nursery and then on to primary school; without a diagnosis, it seemed he was often labelled the 'naughty' child. At times it was difficult to see past his emotional instabilty and outbursts of frustration to the gentle, sensitive soul underneath; even his mummy and stepdad found it increasingly difficult to understand his needs and the reasons for his inability to connect 'appropriately' with his peers and behave in socially 'normal' ways. Art therapy helped him initially - but the allocation of hours soon ran out.
As with any child who is 'disabled' or has additional needs, life with Riley is at best challenging and at worst heart wrenching, but the good days teach us all a little something about being better human beings in general. Notwithstanding, for his family those first five years without any suggestion of a diagnosis became a tailspin of trying to 'deal with' Riley. A constant battle to understand 'what we did wrong'. No baby is handed over at birth with an instruction manual (wouldn't life be so much easier if they were!) and like so many of us parents, Riley's mum and stepdad don't have specialist qualifications. They didn't know what was happening or why life was so tough for Riley. He was ecstatic as each sibling in turn came home from the hospital, gentle and sweet to his 'babies' - but when they got older and started arguing back, not sharing, snatching, all the normal sibling rivalry became too much for Riley and he struggles to cope with them - he just doesn't understand the way their brains work, much as we don't understand completely how an 'autistic' brain works.
Confused, scared and with rapidly diminshing self esteem, Riley began to fall behind his peers in school, and struggled to maintain 'normal' friendships - not for Riley the standard play dates little boys pester their parents for constantly at the school gates. He yearns for his own space and cannot bear for anyone to be in his room, even his parents are on strict invite only terms to this day. He continues to develop obsessive/compulsive traits - he can tell if someone has been in his room, even if they haven't touched a thing - and depends on his parents to give him some sort of stablity amongst the chaos of life as the oldest of four children.
Riley's family moved to Redbourn two years ago and soon obtained a place at a more local and therefore convenient school. Luckily for Riley, staff quickly recognised the additional support and assesment needed. Things happened quickly from here on out. Specialists were called in, Paedeatrician referrals made, medications prescribed, physiotheraphy and sensory therapy routines and regimes drawn up. Again, as anyone who knows anything about bringing up a child with 'additional needs' their differences from their peers become more marked the older they get.
At first, even I have to admit I was sceptical about Riley's diagnosis - surely it wasn't anything beyond a bit of behavioural dysfunction that supernanny couldn't fix? Lately, however, it has become progressively more impossible to deny the fact that Riley has indeed been diagnosed correctly with Autism as wellas ADHD, global learning delay, sensory impairment and severe anxiety. Unfortunately he is also an Arsenal fan, but there's not a lot we can do about that.......In all seriousness, it is impossible to desctibe the challenges Riley, his parents and siblings face every single day - how his anxiety cripples him, how badly he feels about himself, how the medications they have trialled (and discontinued because they dull his spark or worse, give him severely debilitating panic attacks or cause bed wetting) affect the entire family. Riley thrives on one to one adult attention but simply cannot be left alone with other children - children are wonderfully tolerant when they want to be. They are resilient and resourceful and adaptable, however, they also aren't psychologists and can't fully understand Riley. Situations quickly escalate and without adult supervision can even become dangerous.
Whilst Riley's two younger sisters are well, his younger brother, who recently turned one, has a host of as (yet undiagnosed) gastric disabilties. He is tube fed constantly via a catheter that is passed through his nose, bypassing the stomach into his intestines and is likely to need surgery to improve his quality of life fairly soon. Both Mum and Dad have had to give up work to care for their boys and suffice to say, there are going to be a hell of a lot more challenges to face in the not so distant future.
I once read that 'the future is a strange and distant land'; I cannot imagine it would ever be more so than for a family hit with a diagnosis like this. We know that there will be help out there for Riley - the family have requested and are attempting to navigate the obstacles of getting support from health and social care. The local community have begun to rally, offering tips, advice, support, resources and most recently, sponsorship and help with fundraising (big shout out to the Redbourn local businesses!). While social services will offer some support, as will acquiring SENCO support at school and NHS therapy, services are stretched to breaking point and children like Riley don't just 'cope' better, they truly thrive with the benefit of additional support. The kind that the NHS and social services are just physically unable to provide for every child like Riley (though there is no doubt they want to) and which literally changes lives.....
Sensory OT/Riley's team of specialists have recommended lots of equipment which would help Riley with his sensory issues - the struggles with physical touch and sensation that cripple him on a daily basis and seem to get worse every day. The family have chipped in to purchase the affordable items but many of the recommended resources are far beyond the financial capability of the immediate family, who exist on carer's allowance. Since creating a justgiving page and approaching local businesses for support, as well as making us all exceptionally proud of her, my sister Shelley has managed to obtain offers for some of the necessary equipment.
What Riley's family are really hoping for, above all else, is to raise the £8,500 needed to fund an Autism Life Dog - a specially trained dog to help Riley with his social and sensory needs, to help him bridge the gap and live a 'normal' life as much as possible. Above all, like every single other person on the planet, Riley needs a friend. His own friend. Where would we be without those special friends who keep us going through the toughest parts of life, who lift us up and help us through and stand by us when we need a helping hand? Some of us are lucky enough to still have friendships we formed in childhood - myself included. I do not know where I would be without those childhood friends. Riley, however, does not have the ability to make friends like most children. An Autism life dog becomes a best friend for children like Riley; they show autistic kids how to navigate the world and make it less frightening, becoming a friend who won't fall out with Riley or question him because of his additional needs; who won't ask the impossible 'normal' social etiquette from Riley. There is a reason dog is man's best friend - a dog doesn't ask you to be anything other than who you are - he will accept you for you. An autism life dog will help Riley to accept who he is, and share his best and worst moments in life. He (or she) will bolster his faltering self esteem and stand by him through thick and thin. It's no secret that having animals around is good for us; science has shown again and again that there are a multitude of health related benefits in having pets. For Riley, it isn't just the associated reduced risk of hypertension or cardiac disease that would change his life; his autism life dog would make his life meaningful and positive again and keep it that way. Above all, the autism life dog would keep our boy smiling, and that's something we don't see enough of these days.
Thank you for reading. I know it's a long one and we are bombarded by altruistic posts on social media these days but #rileyroostory is one that is very close to my heart as well as my home - and charity starts at home, as they say. Don't forget to donate if you can at
https://www.justgiving.com/crowdfunding/shelley-whitehouse-4
If you can't spare a donation at this point please share this page - every share will help him get closer to his new best bud!
and look out for our craft and upcycling sales - watch this space!
N x
Organizer
Shelley Whitehouse
Organizer
