Re: Residential - some thoughts

[Guest guest]

Thanks for posting Alison and good luck with the next round of funding requests.

That's 4 of us that started out together going the residential route........ and one recovered (Caroline's ).

I know Jon and Polly are very pleased with 's progress at Hassocks though Polly puts a lot of that down to him being the first kid through the door and having it grow slowly around him. Thought apparently now if you try to reprimand him at home he simply replies, you are not staff! Bless him

Mx

Dear allI was really moved by Mandi's email about suddenly realising that she couldn't give Sam what he needed - and was therefore not the best person for him through teenage hood etc.I had a moment like this too - when a friend with an older teenage autistic son said to me - "my boy deserved a life, more than he was getting with me - more than i was able to give - and his brothers deserved a life too" - that was my heart shattering moment. When she went on to describe what her son was able to do at Tadley Horizons, nr Basingstoke - i was truly amazed - for a boy who finds it impossible to go anywhere without being aggressive or having a meltdown - purely through fear, anxiety, and being too big for his mother to be able to manage his adolescent moods - he now goes bowling, swimming, to the gym, to the movies, out to eat etc - all as a result of being at his 38 week residential school. in the end we concluded that it was the pure experience of the staff, the fact that they are not emotionally involved as we are - and the fact that they are able to create an environment at school that we cannot create at home - at school things can be consistent and predictable and well managed and the best schools have a totally CAN DO attitude to outings and being out in the community that made me want to weep - this time with happiness.Orlando has been at LVS Hassocks for the past 4 terms but he has not coped so well with the transitions of weekly boarding and the long holidays, his need for consistency and predictability has grown hugely as he approaches adolescence, and this has massively cut down on what he is now able or willing to do in the local community and as part of the family, and so initially with heavy hearts, but now feeling better about it we are looking, with the advice of our NHS professionals, and also now, almost please God, with Social Services on our side, at 38 and 52 week placements - I agree with MAndi - i used to see that residential was the end of the world, but now i see what it can give our children, and they deserve a life and a peer group - and then when they come home we can fully concentrate on their needs and work with them the way that it has become successful at school etc.I now see severely autistic children when i look at residential schools who are getting opportunities and experiences they simply cannot get being stuck at home - and having a peer group, and friends, and people who really understand working with autistic teenagers - and all those things that we don;t - it is so hard - letting go, but we have to be so brave and do the right thing for them.We love Orlando so much - but he deserves a life too - just like his younger brothers who are branching out and learning new things, and having opportunities all the time to have fun, and be part of things.sorry, still woffling on - but i agree with mandi - we nearly missed the boat until Polly encouraged us to look at Hassocks - and got things going there - although we lost a Tribunal over Hassocks, and are now hoping for a miracle to get this next placement paid for - so, if you have 8 or 9 year olds- i would encourage you to think ahead and at least allow this to be an open subject - it is important that we all share this rather taboo subjectI am also hopeful that there is some truth in the idea that if a child is getting a high level of support through teenagehood - then this will at least influence the type of provision they can expect from adult services - i don't know if this is true or not - but at least he will have had a great teenagehood - and learnt to do all sorts of things we can now longer teach him, and had his enormous anxiety managed and helped and his stress levels fall - we love him so much and it is unbelievably hard to let him go - but he deserves a life - a life that we can no longer give him -i guess this decision comes later for many parents of NT kids - but as with us autism parents, this comes harder, faster and earlier -will keep you posted, and let's pray for a miracle for Orlando, he deserves it -Alison

[Guest guest]

Thank you for posting, this really should be discussed much more, hate the thought that anything is a taboo subject, and why should it be anyway? Course this is a biomed list but there is nowhere that I can find that discuss this issue in any depth and not much out there talking about older children at all, most especially if they are at the severe end.

It really does look like the 24 hour curriculum is key here for our kids and of course only a residential school could provide such a thing.

I see this with the ABC data we do for , tbh I feel a complete eejit filling that in as I know full well the antecedent at least 90% of the time is when he is bored, but I am wasting funds for someone to tell me what I already know, thing is who can spend at least 12 hours a day accounting for a teenagers very limited amusement?

Vicky

Thanks for posting Alison and good luck with the next round of funding requests.

That's 4 of us that started out together going the residential route........ and one recovered (Caroline's ).

I know Jon and Polly are very pleased with 's progress at Hassocks though Polly puts a lot of that down to him being the first kid through the door and having it grow slowly around him. Thought apparently now if you try to reprimand him at home he simply replies, you are not staff! Bless him

Mx

Dear allI was really moved by Mandi's email about suddenly realising that she couldn't give Sam what he needed - and was therefore not the best person for him through teenage hood etc.I had a moment like this too - when a friend with an older teenage autistic son said to me - "my boy deserved a life, more than he was getting with me - more than i was able to give - and his brothers deserved a life too" - that was my heart shattering moment. When she went on to describe what her son was able to do at Tadley Horizons, nr Basingstoke - i was truly amazed - for a boy who finds it impossible to go anywhere without being aggressive or having a meltdown - purely through fear, anxiety, and being too big for his mother to be able to manage his adolescent moods - he now goes bowling, swimming, to the gym, to the movies, out to eat etc - all as a result of being at his 38 week residential school. in the end we concluded that it was the pure experience of the staff, the fact that they are not emotionally involved as we are - and the fact that they are able to create an environment at school that we cannot create at home - at school things can be consistent and predictable and well managed and the best schools have a totally CAN DO attitude to outings and being out in the community that made me want to weep - this time with happiness.Orlando has been at LVS Hassocks for the past 4 terms but he has not coped so well with the transitions of weekly boarding and the long holidays, his need for consistency and predictability has grown hugely as he approaches adolescence, and this has massively cut down on what he is now able or willing to do in the local community and as part of the family, and so initially with heavy hearts, but now feeling better about it we are looking, with the advice of our NHS professionals, and also now, almost please God, with Social Services on our side, at 38 and 52 week placements - I agree with MAndi - i used to see that residential was the end of the world, but now i see what it can give our children, and they deserve a life and a peer group - and then when they come home we can fully concentrate on their needs and work with them the way that it has become successful at school etc.I now see severely autistic children when i look at residential schools who are getting opportunities and experiences they simply cannot get being stuck at home - and having a peer group, and friends, and people who really understand working with autistic teenagers - and all those things that we don;t - it is so hard - letting go, but we have to be so brave and do the right thing for them.We love Orlando so much - but he deserves a life too - just like his younger brothers who are branching out and learning new things, and having opportunities all the time to have fun, and be part of things.sorry, still woffling on - but i agree with mandi - we nearly missed the boat until Polly encouraged us to look at Hassocks - and got things going there - although we lost a Tribunal over Hassocks, and are now hoping for a miracle to get this next placement paid for - so, if you have 8 or 9 year olds- i would encourage you to think ahead and at least allow this to be an open subject - it is important that we all share this rather taboo subjectI am also hopeful that there is some truth in the idea that if a child is getting a high level of support through teenagehood - then this will at least influence the type of provision they can expect from adult services - i don't know if this is true or not - but at least he will have had a great teenagehood - and learnt to do all sorts of things we can now longer teach him, and had his enormous anxiety managed and helped and his stress levels fall - we love him so much and it is unbelievably hard to let him go - but he deserves a life - a life that we can no longer give him -i guess this decision comes later for many parents of NT kids - but as with us autism parents, this comes harder, faster and earlier -will keep you posted, and let's pray for a miracle for Orlando, he deserves it -Alison

[Guest guest]

Thanks for sharing , leaving my feelings of failure behind are my news years resolution and it is hard to understand unless you are at that place. Sam is being very cute today (day 3 round)

Mandi x

I haven't mentioned Conor on here very often because i felt embarresed and ashamed with the outcome but reading your posts has helped me share my story with you all, it is not an easy decision to make and i know oh so well how you all are feeling.

[Guest guest]

Yes thank you for posting Alison, i haven't posted on here about my oldest son Conor (who is will be 16 this month) mainly because i felt like i had faied him down and i carried alot of guilt on me for that reason. Conor wasn't autistic, he was born NT at two months old, just a week after his first vaccination he started having seizures(although i never put two and two together back then), i was 24 years old at the time and had two littles girls who were 2 & 4 years old, Conor spent alot of time in hopital because of his seizures, it was heart breaking for me to have to choose between being at the hospital with my sick child or be at home with my girls, my husband (who wa useless when he was around) worked away and was only home at weekends, where he treated the house like a hotel and laundrette. Over the years Conor got worse not making any milestones whatsoever, having cataracts in both eyes(i now know to be oxadative stress) which i faught to get removed, the eye surgeon didn't want to do it at first but i faught with him and won, he then had to have a gastrostomy fitted into his stomach so he could be fed and a fundoplication (where part of the stomach gets wrapped around the esophagus to stop him being sick) which was fine but you would feed him the smallest amount and he would wretch and gag still, which he wasn't allowed to do as the surgeon had told me that it could undo the opertion. My marriage also broke down at this time but i actually found that to be a relief as i had one less person making demands on me. Over the years this had such an effect on my daughters not getting much time with me, social services.....don't even go there, they told me (a cuple of month ago ) that i was failed by them where Conor was conserned, no shit sherlock! I am 4ft 11inches tall and weight 7 and a half stone and i was carrying my disabled incontinent son upstairs to bath him every day till i physically couldn't do it anymore, at this point he was 9 years old and weighted approx 4.5 stone, i had no aids whatsoever to bath him and Conor couldn't weight bear at all so it was like lifting a dead person out of the bath, the times i nearly dropped him. I was at an all time low, trying to hold down a part time job, trying to be a single parent to my girls and my Conor and trying to not feel isolated, i was at breaking point so told social services they had to take him, they tried to fob me off but i told them in no uncertain terms that it would either be Conor going into care now or me going into a mental hospital and all my children going into care if it was delayed. They heeded my warning and i was so lucky they had found a lovely lady to foster him, i told myself over and over again that it was for the best of everyone but in my heart i really felt like i had failed him, i had given up on him it has been a tough cross to bear over the past 7 years feeling a failure and guilt, i think that is why i have a gun hoo approach to Harry, i don't know what the future holds for him but i know i am in such a better place than i was with Conor, as Conor never had a diagnoses, they tested him for common, rare then weird and wonderful and it all came back clear, so they said it would come under a heading of "a typical type of muscle, eye brain disease"....I call it vaccine damage but then i have learnt alot since then, thanks to all the wonderful peaople on this group, i really seriously don't know where i would be without you all, even that tough cross to bear is getting lighter, in my heart of hearts i know i did my best at that time with the tools i had. I haven't mentioned Conor on here very often because i felt embarresed and ashamed with the outcome but reading your posts has helped me share my story with you all, it is not an easy decision to make and i know oh so well how you all are feeling.

x

To: Autism-Biomedical-Europe From: Mum231ASD@...Date: Sun, 2 Jan 2011 09:03:12 -0500Subject: Re: Residential - some thoughts

Thanks for posting Alison and good luck with the next round of funding requests.

That's 4 of us that started out together going the residential route........ and one recovered (Caroline's ).

I know Jon and Polly are very pleased with 's progress at Hassocks though Polly puts a lot of that down to him being the first kid through the door and having it grow slowly around him. Thought apparently now if you try to reprimand him at home he simply replies, you are not staff! Bless him

Mx

Dear allI was really moved by Mandi's email about suddenly realising that she couldn't give Sam what he needed - and was therefore not the best person for him through teenage hood etc.I had a moment like this too - when a friend with an older teenage autistic son said to me - "my boy deserved a life, more than he was getting with me - more than i was able to give - and his brothers deserved a life too" - that was my heart shattering moment. When she went on to describe what her son was able to do at Tadley Horizons, nr Basingstoke - i was truly amazed - for a boy who finds it impossible to go anywhere without being aggressive or having a meltdown - purely through fear, anxiety, and being too big for his mother to be able to manage his adolescent moods - he now goes bowling, swimming, to the gym, to the movies, out to eat etc - all as a result of being at his 38 week residential school. in the end we concluded that it was the pure experience of the staff, the fact that they are not emotionally involved as we are - and the fact that they are able to create an environment at school that we cannot create at home - at school things can be consistent and predictable and well managed and the best schools have a totally CAN DO attitude to outings and being out in the community that made me want to weep - this time with happiness.Orlando has been at LVS Hassocks for the past 4 terms but he has not coped so well with the transitions of weekly boarding and the long holidays, his need for consistency and predictability has grown hugely as he approaches adolescence, and this has massively cut down on what he is now able or willing to do in the local community and as part of the family, and so initially with heavy hearts, but now feeling better about it we are looking, with the advice of our NHS professionals, and also now, almost please God, with Social Services on our side, at 38 and 52 week placements - I agree with MAndi - i used to see that residential was the end of the world, but now i see what it can give our children, and they deserve a life and a peer group - and then when they come home we can fully concentrate on their needs and work with them the way that it has become successful at school etc.I now see severely autistic children when i look at residential schools who are getting opportunities and experiences they simply cannot get being stuck at home - and having a peer group, and friends, and people who really understand working with autistic teenagers - and all those things that we don;t - it is so hard - letting go, but we have to be so brave and do the right thing for them.We love Orlando so much - but he deserves a life too - just like his younger brothers who are branching out and learning new things, and having opportunities all the time to have fun, and be part of things.sorry, still woffling on - but i agree with mandi - we nearly missed the boat until Polly encouraged us to look at Hassocks - and got things going there - although we lost a Tribunal over Hassocks, and are now hoping for a miracle to get this next placement paid for - so, if you have 8 or 9 year olds- i would encourage you to think ahead and at least allow this to be an open subject - it is important that we all share this rather taboo subjectI am also hopeful that there is some truth in the idea that if a child is getting a high level of support through teenagehood - then this will at least influence the type of provision they can expect from adult services - i don't know if this is true or not - but at least he will have had a great teenagehood - and learnt to do all sorts of things we can now longer teach him, and had his enormous anxiety managed and helped and his stress levels fall - we love him so much and it is unbelievably hard to let him go - but he deserves a life - a life that we can no longer give him -i guess this decision comes later for many parents of NT kids - but as with us autism parents, this comes harder, faster and earlier -will keep you posted, and let's pray for a miracle for Orlando, he deserves it -Alison

[Guest guest]

I feel better for sharing so it could be my new years resolution too, its just nice to share with people who wont judge me, many people who never walked in our shoes have done, believe me when i say some people can be down right cruel...even family members, who never helped out for a second! I have had awful cold for 5 days and counting, Harry has been on the rampage, tonight he has kicked in my radiator cover, i really don;t know how to handle this new found naughtiness, i have told him off but he just says sorry and thinks it is a game, i have been trying the time out step as his cognitive/receptive language is very good, just not sure if i am approaching this the right way....although it may be because we have had along break in chelation, 2 weeks and counting, Harry had a nasty cold & cough then i went down with it, any suggestions anyone.....

x

To: Autism-Biomedical-Europe From: Mum231ASD@...Date: Sun, 2 Jan 2011 14:14:50 -0500Subject: Re: Residential - some thoughts

Thanks for sharing , leaving my feelings of failure behind are my news years resolution and it is hard to understand unless you are at that place. Sam is being very cute today (day 3 round)

Mandi x

I haven't mentioned Conor on here very often because i felt embarresed and ashamed with the outcome but reading your posts has helped me share my story with you all, it is not an easy decision to make and i know oh so well how you all are feeling.

[Guest guest]

Hi

We looked at Prior's Court for Tom (12) but we didn't think he'd fit in there

and spoke to Hassocks but Tom's too low functioning for them. He's a bright boy

with profound autism - we've struggled to find somewhere even within specialist

provision that we feel actually would suit him, never mind trying to get him in.

So he's here still, at a very good day school and with about 26 nights a year

respite for him and us. He loves going to respite, which gives me hope for his

" independence " and there's no way he gets the same stimulation here. However,

he does now absolutely love being with us - that side of his autism, the world

of his own bit, has totally gone. So in part I think we want to keep him close,

just to experience something we hadn't seen since he was really young. But

whilst it's one thing for Mark and I to choose that (and there's two of us, so

naturally it's far easier), I do wonder regularly whether it's the right choice

for his little brother who has to make so many compromises to accommodate Tom's

autism. Steph x

>

>

> I feel better for sharing so it could be my new years resolution too, its just

nice to share with people who wont judge me, many people who never walked in our

shoes have done, believe me when i say some people can be down right

cruel...even family members, who never helped out for a second! I have had awful

cold for 5 days and counting, Harry has been on the rampage, tonight he has

kicked in my radiator cover, i really don;t know how to handle this new found

naughtiness, i have told him off but he just says sorry and thinks it is a game,

i have been trying the time out step as his cognitive/receptive language is very

good, just not sure if i am approaching this the right way....although it may be

because we have had along break in chelation, 2 weeks and counting, Harry had a

nasty cold & cough then i went down with it, any suggestions anyone.....

>

> x

>

>

>

> To: Autism-Biomedical-Europe

> From: Mum231ASD@...

> Date: Sun, 2 Jan 2011 14:14:50 -0500

> Subject: Re: Residential - some thoughts

>

>

>

>

>

>

>

> Thanks for sharing , leaving my feelings of failure behind are my news

years resolution and it is hard to understand unless you are at that place. Sam

is being very cute today (day 3 round)

>

> Mandi x

>

>

> In a message dated 02/01/2011 16:39:32 GMT Standard Time, michelle0471@...

writes:

> I haven't mentioned Conor on here very often because i felt embarresed and

ashamed with the outcome but reading your posts has helped me share my story

with you all, it is not an easy decision to make and i know oh so well how you

all are feeling.

>