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DH wants ds1 to go to a resi unit

35 replies

BobbingForPeachys · 23/10/2009 19:08

ds1 thumped me gard in M&S and when we got home locked ds3 in the loo and hit him repeatedly for ten minutes whilst ds3screamed andwetried to bash the door down

I don't want tolose my baby, and I think I have asd placement from 2011 sorted, but i cant go on like this can I?

OP posts:
BriocheDoree · 24/10/2009 16:25

Peachy, no advice, but {{hugs}}.
Whatever you do, don't feel guilty. You will do what you think is best for you and for ALL your DSs. You will just need time to make that decision whatever you decide.

Davros · 24/10/2009 20:27

Sorry, haven't read all of this and will try to tomorrow BUT residential school is the best thing we did for DS (and therefore for all of us). We managed the deteriorating situation and tolerated behaviour for quite a number of years but decided to look seriously when he was about 11 as our Paed, who we knew well and trusted, said it would be good for DS, not that WE needed a break or it would be better for DD blah blah (!! hadn't thought of it that way before). He goes to a great school with wonderful grounds, facilities and staff. It is the best thing we could have done for all of us. Mind you, we didn't have any other DCs until he was 7.5 years old so we could manage around him a lot more than other families. We also gave medication (risperidone) for about 3 years first he went to residential and this is certainly worth trying before imo, then we got residential respite for one weekend per month and I think that kept us afloat for a while longer. Regardless of how it affected US, and it certainly did, e.g. no holidays for 10 years, broken nights for longer than that etc, it was really all about HIM. We did the right thing for HIM and it is therefore the right thing for US as always. Don't let guilt or judgemental attitudes put you off doing it, IF indeed it IS right for you. When the time came for him to go I had let go of all the guilt and doubts and often feel rather smug that many of my friends are not allowing themselves to "think the unthinkable" and struggling on. Mind you, most of their DCs do not have the behavioural issues that DS does and they do not have much younger kids like we do. He goes termly on a 44 week placement which sounds extreme and harsh but he is backwards and forwards regularly, coming home for weekends and holidays and we go to the school often. When he actually started he was going through a pretty good phase and I had some doubts, not that it wasn't the right thing to do, but maybe the timing was wrong. DS said to me, and I really believe he was right, that it was better for him to go when things were good rather than when things were desperate and falling apart (although they had been for us to get to that stage at all). DH also describes it as "the best of both worlds" and I think that is right. We can function and do things when he is at school and we love it when he comes home and he does too, that is his holiday time, mix and match is great if you can do it. HTH

sphil · 24/10/2009 20:43

I can't add anything Peachy but wanted you to know I'm thinking of you .

sphil · 24/10/2009 20:43

I can't add anything Peachy but wanted you to know I'm thinking of you .

BobbingForPeachys · 24/10/2009 22:27

Just wanted to say thanks, I am reading but keeping distance whilst I think. The posts are incredibly helpful.

OP posts:
lou031205 · 24/10/2009 23:48

Davros, what a great post.

MojoLost · 25/10/2009 11:53

peachy, I don't post often and I don't "talk" very much to you on here, but you sound incredibly strong. Copying with violence and extreme behaviour is so tiring an difficult. I'm sure you'll do what is best for all of you. xx

TotalChaos · 27/10/2009 08:25

great post Davros. I know someone with a DD with HFA who goes to a resi unit, and the DD has absolutely thrived there, being somewhere with very small classes and where the environment is geared around ASD.

Davros · 27/10/2009 13:39

Thanks Lou and TC . That is the thing, it doesn't have to be a disaster or the end, rather it is a new beginning. Of course it is very dependent on getting a place at somewhere that works and is the right placement. I describe our situation as a success, not a failure.

I remember several years ago, just the thought of DS going somewhere residential would make me cry and I clearly remember vowing that we would never do it. I wonder if I felt so strongly because underneath it all I knew it was actually something of a strong possibility for us? I felt the same about medication until it became clear that it might be the only way he could stay at home and I do believe that it delayed him going to residential. That would have meant him going away at about 9 years old instead of 12.5 years.

Of course it isn't all plain sailing. Contact with the school needs more planning and is less spontaneous. At the moment we get 2 phone calls home each week, one a webcam, photocopies of school/residential book, photocopies of eating diary, toilet diary, sleep diary. I can phone or email staff any time and I always try to go to parents' meetings and have become Secretary of the PSA as I thought it would help me with contact and familiarity.

When DS comes home we have to adjust a lot in practical terms - locking doors, buying lots of his favourite food and snacks, getting on top of the bedding washing cycle etc - it makes day-to-day life harder work but most of it is hardly a big ask and we have got quite good at all of that now. It is also a big adjustment for us and DD when he comes home as far as what we can do, where we can go, DD not having friends round etc but, as I said before, we enjoy having him here and I can manage the exhaustion as I know it isn't forever. I have also lost a bit of the "power" I used to have over him but I'm not sure if this is because he is away from me or because he is 14! In fact, he is home this week for Half Term and my "power" seems to have returned (for now!). I have a long term illness myself and I dread to think how years and years into the future of having him at home would have affected me although, like most people, I've always managed and it hasn't killed me and as far as I'm concerned its my job iyswim. But I am MUCH better in myself healthwise and psychologically and I have nothing but love and patience for DS whereas in the past I regularly lost it badly with him, got upset, felt helpless etc. I won't go into the details of the total disasterous phase we had that led to the serious seeking of a residential place but I'm sure most of you can imagine. Well meaning but tactless people (we all know the sort!) sometimes say how great it must be for me to be able to do what I want, have a break etc etc. GRRRR, no-one wants their child, especially with SN, not to be able to live at home happily and places aren't funded because "mum's a bit tired". Its a tough decision, hard to find somewhere you are happy with and get a place, tedious to sort out the funding and sometimes heartbreaking to think how things could have been. But if it is the best option, then no-one should let you think you're doing it for YOUR benefit, or because you can't be bothered anymore or because you want an easy life.

The other side benefit is that DS is now in the system good and proper. Soc Svs have LEGAL responsibilities towards him, they must visit him every 2 months and hold Reviews every 6 months (?I think) which I find very useful. DS is classified as LAC (looked after child) which is modern PC speak for "in care". Horrifying when you first hear it but I feel it gives us a lot of protection while we retain Parental Responsibility. And when it comes to him leaving school I feel we will be better placed for his adulthood. Not that this is a reason for seeking a residential placement, but it something no-one tells you about until you find out for yourself.

Davros · 28/10/2009 07:11

A couple of other things I forgot. It can take a long time to sort out. It probably took about 18 months from us deciding to seriously go for it and DS actually starting at his new school and we were already partly in the system as he had been getting residential respite (therefore was LAC just for those times that he was away). It didn't have to take that long but we changed the school we were requesting, then had to go through several Panels about 38 vs 44 week placement and the place at the school had to be available. You have to be 100% committed as far as professionals are concerned, any chink in your armour and they will take advantage (as always). We decided that, if the time came and we had changed our minds or didn't want to do it at that time, we just wouldn't and would deal with it then. You can also see your child as often as you want. Most residential schools have a house or accommodation nearby for families to stay in which seems to work well. We don't do that as visiting DS is quite disruptive to him so we bring him home but I know another family who go almost every other weekend, take the other kids and have a nice time. They take their ASD DS out for the day on Saturday and he then sleeps in his usual room at school. Another thing for us, by coincidence, is that it has been easier to manage puberty. This could be a big problem with a 6 year old girl at home and a 14 year old boy with ASD who goes around without any clothes whenever he can get away with it. HTH.

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