Selling Houses - BBC2 last night

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Did anyone see this about the family of 5 who wanted to move from Essex to a remote part of Scotland for the benefit of their 2 autistic boys. I found this totally harrowing that they basically moved to avoid the eldest son (13) being taken into boarding care as his school could no longer cope with him. You have to wonder as to whether this would have been the right move anyway as I am not sure what quality of life any of the family were getting. The 5 year old girl who was normal and a delight had to be constantly protected from the agressive tendancies of the eldest child when he had one of his turns which required all the strength of his father to try and contain. The stresses the parents were under was tremendous, how can they possibly cope with the relentless pressure. I have to admit to being fairly ignorant about autism and frightened by its implications. I bawled from the sheer relief that my two boys dont suffer from such a terrible illness and bawled from the knowledge that any parents watching who have very young autistic children can only imagine the horrors that may lie ahead in their quest to do the best for their children.

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I cried and cried. I am amazed that they are still together as a couple, there is so much strain on their relationship. and there was one shot of the older boy christopher, and the look in his eyes: you just loved him, despite how horrendously difficult he is. The prospect of him going to a boarding school on the mainland was dreadful. It made me realise what motherhood is all about: really truley unconditional love. This was one of the hardest things to watch and I wanted to post about it, but didn't know how to start as I feel so totally pathetic compared to the amazing mothers on mn that deal with their autistic children every day.

Just to add, I have no way of knowing whether ds will be autistic or not (he is only 5 months). But whether this or any other difficult condition arises in him, I realised that I will love him no less, and would fight tigers to get the best for him. It's such a powerful feeling.

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I watched this and wondered why they uprooted their family so far away. From the very little I know of autism, if routine changes then this can badly affect the sufferer. Surely moving to the other end of the country, with nothing familiar around, friends/family etc would make things worse? Didn't watch the first 15 mins though so not sure of the full reasons for moving however.

I watched the last 45 minutes or so, and although i could understand the mothers determination to give her kids a good life and do the best for her eldest son, i did feel that the little girl was not being given enough though in all of this....
I'm not saying that she should of sent the son to a residentail school, but they really didn't seem able to cope.

The part where the son went after the little girl was so frightening and i wasn't there, the little girl must of been terrified.

I hope it all works out for them, but they do need alot of extra help i think and i'm not sure they'll get it there.

Resources and help for families with autistic children is pretty dire. We are lucky at the moment because we have a portage worker who visits us at home every 2 weeks to see what she can do to help us. However, this will end in July as ds1 will no longer be a pre-schooler. Our portage worker tells us that she and her colleagues feel devastated that they have to just leave families with no support and no one to help them fight all the relevant authorities -and belive me, it really IS a fight. She has been spending some time trying to find us someone else who can visit us. She would like the school nurse, where ds1 will be starting school in September, to help us but she doesn't yet know if this will be possible. Our portage worker has done her best to involve our HV team but they have only once spoken to ds1 since his 2yr check nearly 2 years ago. The portgae worker invited one HV to visit with her. The HV turned up, stayed for 10mins and hasn't spoken to us since. That was about 2 months ago.

I can easily understand why the family would want to move.

I didn't see the programme but my mother has worked with children with autism and her friend has a autistic child now an adult and I can only say how wonderful these parents are to even try to cope with a child that has autism. The strain on these parents is hard to imagine but it is a life long struggle for help. larsxx

I cried too, that poor woman fighting with little or no real outside support for her choice and keeping her family together. IF I was in that position which such a child, I would not trust anyone outside myself to protect and care for him as I could, bit different if it is in their best interests I expect. Definitely hard work for them all...

We watched it - it was very sad. We questioned whether they would be able to get help in that part of Shetland should they need it - surely there were more resources in Essex ?

We also felt that they didn't want to admint that they could not handle their oldest boy - it seemed as if he really did need specialist help and a good residential place may have been better for him.

We felt that they had compromised the other 2 kids, particularly the younger boy who was getting on very well at his school, for the sake of the oldest child.

Surely uprooting them and moving to a totally alien environment would have been very unsettling for the two boys ? I have never dealt with autism so that is just a layman's comment.

I am very grateful that we don't have to deal with those types of problems (so far).

it is interesting as I just cried thankful for my dd (down's syndrome)and my heart went out to those parents......then got angry at the film crew who I felt were being very uncaring and intrusive... especially whent he father had to tell them to get out of the way so he could go after his son. I was calmed a little when one of the crew went and got the little girl for them. But when the eldest boy looked very agitated and upset surely sticking a camera in his face is not helpful.

having lived in essex - I can understand not getting resources and support - we have some but not all my dd needs.......there clearly is such a demand ( and it does depend on where you live as to what you get!!) that people are not getting what they need. We are moving to Aus so our daughter can have speech therapy!! I can understand exactly what that family did and why.

I didn't see the program but it sounds like such a sad situation, for everybody concerned... I know two mothers whose sons with autism are in residential schools. One started when he was six, the other at ten. For their families this seems to work out well and everybody is happy. It sounds like the parents & children in this program were let down badly by everybody.

I just caught the very end of it (thank god) and as soon as I set eyes on the older boy I knew he was autistic.

The problem with having a child whose condition is very severe is that you just know that someone else will not look after him like his parents/family and certainly will not love him. Its not a question of whether you can handle them or not but that you must. A "good residential place" is not necessarily the answer or even available. Its also unfortunate that the other 2 children might have been compromised by the parents' determination to look after the oldest son but being a family means that most people could not choose to prioritise those 2 younger kids at the absolute cost to the older child who needs the most care of all of them. No doubt the little girl with have issues about some of the things that they have done (don't we all!) but in the end she will be able to look after herself and the older boy will not. With my 8.5 year old autistic son and 1 year old baby its been very clear to me that HE needs me more than she does. They both get me but he needs me more.

I think the perception of all autistic children as unable to handle change and being stuck in routines is a bit overdone as many don't have a problem or are OK with careful planning. However, no way would I go to somewhere so remote as I think the most and best help is available in a big city. Maybe they went there BECAUSE there is very little there and they wouldn't be forced into provision and services that they didn't want and were offered only because they are available, not necessarily good.

Well we moved because after having ds2 (just as ds1's problems were becoming apparent- he was 2 ) it became clear that there was no way we would be able to manage in Bromley as we were too far from family support. Luckily I don't have an abitious husband- so he was happy to move to Devon. Support from the authorities is as crap down here as it was in London but we have my mum who comes in almost every day after work (she works full time) to help out.

Wish I'd seen this - I heard it was very much as living with autism is. Like Davros I would worry about moving so far from access to support. We've had enough trouble finding people who do ABA down here- although I have to say the tutor we have found is EXCELLENT

I think Davros makes a good point as well. Often people will suggest that an autistic child should be sent away for the benefit of the other children and to allow family life. I think that is terible. I love my eldest son as much as his younger brother but my eldest son needs me more and will need me for longer.

And I agree with Davros about routines- is it me or can that be more of an AS thing? My son doesn't give much of a fuss about routines providing you tell him what's happening next.

As for resources- some parts of remote Scotland get VERY GOOD resources because an expert happens to move there and there is no other competition for the resources, other areas will get zilch though. Having said that with the exception of ds1's LSA - who is extremely good (although also untrained- she's just a natural and a wonderful person), anything else of any use we've had to pay for or do ourselves so I doubt it makes much difference. I would find it difficult to be away from other parents of autistic kids though- they're my biggest support of all (already seen 2 and spoken on the phone to another today).

Jimjams See you would have liked to see the programme. i haven't watched it yet, but hopefully fingers crossed i recorded it properly. If its ok would you like me to send it on to you as seems others found it interesting.

oh yes please lemonice That would be great.....

And sophable - bless you- whenever you write a message you say the right things I mena this from earlier: "Just to add, I have no way of knowing whether ds will be autistic or not (he is only 5 months). But whether this or any other difficult condition arises in him, I realised that I will love him no less, and would fight tigers to get the best for him. It's such a powerful feeling." Ppeople don't realise this (professionals as well I think) but you do - which is why you can't just ship a child off to residential care for the sake of the other children. The people I know who have placed their child in residential have taken a long time to get to that point- and when it is done it is done for the child's benefit as much as theirs....

I just heard about this programme from a friend of mine at lunch time - I really wish I had seen this. I am especially interested in the way that the father restrained his son, as this is what I had to do to my 6 year old ds last night (ended up with 3 large bite marks on my arm and spit all over me).

If I felt that another area had more amenities for autistic children, I would go like a shot. My ds also does not worry about routine, but like Jim jams it helps if I tell him what is happening next.

Jimjams

I will check it out tonight and hope it recorded. Would you like to email me your address?

I also wondered if they were just running away because they'd run out of options at home and couldn't think of anything else to change except their location, which seemed bleak and underpopulated so less likely to offer the family support - felt I wasn't given enough info about WHY they wanted to move and what they thought the new location would give them. I was very moved though when Christopher's mum was talking to him about his day at school and how difficult it had been and said, "will you be a good boy' and he looked at her like a little puppy and just put his head on her shoulder in what looked like love and defeat. Incredibly hard for all them, not least Christopher himself.

Jimjams, I think I've finally understood what you mean when you say that people think your autistic/special needs child isn't as loved or loveable or important as your other children. I've always secretly been a bit dubious about this but I finally get it. After all,when people say, 'why not put him in residential care for the sake of the other child/children' - it's surely tantamount to saying 'get rid of the defective one so you can concentrate on your real kids - the ones that work properly." After all, nobody suggests putting the other child/children into residential care so the autistic/special needs child can better get his or her needs met and more attention from the mother, do they? And they are equally her children. Am I right at last, do you think?

I know exactly what you're saying, aloha. I was reading this thread and was horrified at the idea that these people should have sent their elder son away for the sake of the younger children. And yet... I know fine well that 18 months ago, pre-mumsnet, I would have thought exactly that. Today though my reaction was how appalling it was to think of facing anyone with the idea that they have to sacrifice one much-loved child for the sake of two other much-loved children.

Thanks lemonice- I've sent my email address via mumsnet- there wasn't room to type all my contact stuff in- but will send it to you once I've heard back from you. Many thanks- very kind.

Aloha its little comments like that that give the game away really. But its a totally accepted view- its only when you have a child with severe difficulties that you realise how wrong it is. So much of parental love is protective- it's very easy to love a child who needs more protecting than most.....

but what are people meant to do?? One of the women I know whose son started residential school when he was ten simply couldn't cope with his violence anymore. She is petite and was finding it very difficult to restrain him and stop him from injuring his younger siblings. The other one who started residential at six was also being extremely violent towards his baby sister. I really don't think they love their autistic children any less, and I am sure they would be very upset to read this thread. Are parents meant to go beyond breaking point? And anyway, these two mothers both feel that their sons are much happier and more settled at school.

geekgirl I don't think you've read out messages properly. In an earlier message I wrote "The people I know who have placed their child in residential have taken a long time to get to that point- and when it is done it is done for the child's benefit as much as theirs.... " and Davros wrote " A "good residential place" is not necessarily the answer or even available. Its also unfortunate that the other 2 children might have been compromised by the parents' determination to look after the oldest son but being a family means that most people could not choose to prioritise those 2 younger kids at the absolute cost to the older child who needs the most care of all of them". This is not saying that people should never said their child to residential schools, just that many families cannot do it and do not want to. The attitude I am talking about is one that exists in society which assumes that the dodgy child can just be shipped off leaving the parents to deal with their "real" children. We are simply saying it isn't like that. It's not any sort of criticism of people who have chosen residential- the people I know who have managed to get residential (which is another issue in itself) have gone through sheer hell before reaching that stage.

Aloha - imho you completely "get it" and have said it very well
Geekgirl, I've been stewing over what I said over night and have only just seen the other messages. I didn't want it to sound like I'm anti-residential at all and I certainly don't look down on parents who choose it for whatever reason, I know one or two whose kids are older than mine. Again, like the people you know, it has been done with not only the NT kids in mind but also the welfare of the ASD child.
An issue I've had in the past, though not often, is encountering that attitude of "ship him off for everyone's benefit" when he was our ONLY child! i.e. we could relax and get back to having holidays etc!!
My personal experience is that services are better in a big city and second to none imho in the part of London where we happen to live (LB Camden) but the only "support" as such has come from other parents I(useless but nice family ) and that definitely includes all of you on MN.