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JeanneA

Residential Update

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HI, Glen has been home just over 2 weeks now after his inpatient assessment. He has totally withdrawn into himself and is self harming and also hitting out at us. He looks totally unhappy no matter what we try and do to motivate him.

 

Today the social worker came round, she has been brilliant I can only but praise her, she totally understands how we are feeling: we are living on edge all of the time when Glen is around, she said that she was amazed that I have managed to keep him at home this long (17 years).

 

Later this week the SW is going to visit the residential placement that everyone has agreed upon: young foundations in the midlands. They have their own classroom for young people specifically with autism, we are very impressed with what they have to offer. The placement would be for 52 weeks. It looks like it will now go ahead as long of course that all goes well the the SW visit to the place. I will keep you updated.

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I really cant believe you have been left with no support over the easter holidays though, especially with all the proffessionals involved.

 

I am pleased a social worker witnessed the situation within your home today and that hopefully some light will come out to all this, I am in very similair situation but J is now in long term respite until we can get him in a residential school however that will take months, does Glen have a CARE PLAN written up from social services? are you getting any respite in the intirum to the residential school, Glen is going to need a very specific tailored transition period of home to residential school so your still going to need support in the interim otherwise it could cause difficulties for the residential placement, basically they will have support of a team of people where at home its just you.

 

I am upset that you where left with no real support over the holidays when you and Glen really needed it the most but lets hope that the result of that and the consequences can be clearly engraved on your familys faces can ensure Glens long term needs are met.

 

I miss J terribly but I know if he was home with no respite I would struggle too.

 

I would ensure there is more support in the home while your going throw the process of transition to resi school, that in itself is going to a journey of challenges as it is.

 

JsMumx

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Hi thanks for your reply. I realise you to are going through a difficult time but we know we have to do the right thing for our kids. Yes Glen does have a care plan and respite have been very good they have taken him today for 2 nights and are also having him for 4 nights over the weekend. We also have another organisation involved which was arranged via the social worker, they met Glen last Thursday and will be coming to take him out to places he enjoys each week. I will however keep the pressure up on help at home as like you say it is vital. My mental health cannot take much more I have to admit it is horrible living life 'on edge' all of the time.

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Hi thanks for your reply. I realise you to are going through a difficult time but we know we have to do the right thing for our kids. Yes Glen does have a care plan and respite have been very good they have taken him today for 2 nights and are also having him for 4 nights over the weekend. We also have another organisation involved which was arranged via the social worker, they met Glen last Thursday and will be coming to take him out to places he enjoys each week. I will however keep the pressure up on help at home as like you say it is vital. My mental health cannot take much more I have to admit it is horrible living life 'on edge' all of the time.

 

 

I think for the short term this new situation is essential to give you a break and to ensure Glen gets a social and recreation needs met however when J was in a similar situation where he was in oxfordshire for Resi school, then weekends and holidays he came home in Yorkshire and then when he attened respite he is in Lincolshire so having three different accomadations ment lots and lots of transitioning, so for J it didnt meet his needs, and that is why were pushing for a one placement with ballanced home overnight visits for short periods as he does want to be home obvously but SS, LEA wanted J to be all over the country, which obvously unsettled J, ok I admid now he is in care it reduces that now to two provisions but its still not meeting his special needs, and the LA have now agreed to a 52wk provision so there is less transition.

 

So I would use similair reasons because I would imagine that all the transitions Glen now has could potentially cause additional behavioural problems so I would still ensure that they dont make these presant arrangments long term arrangments if at the end of the day what is NEEDED is a 52wk provision.

 

JsMumx

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Yes everyone is in agreement that Glen needs a 52 week placement which is good to have all on side. Glen cannot do lots of transitions as now everyone has realised since having his inpatient assessment which has proved beneficial. I have a report from Prudhoe that Glen cannot tolerate transitions he needs very few indeed, ideally all in one place, i.e. where the residential placement in mind would suit. At least all the professionals at last realise this.

 

Keep me updated as I will you. :)

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Keeping everything crossed that you get the placement you want, and that everything runs smoothly with funding, etc. :pray:

 

Bid >:D<<'>

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Thanks bid, my body is completely crossed :lol:

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Hi Jeanne,I hope it all goes well for you both and the transition is as smooth as possible. It has got me thinking. Is it inevitable that our children will eventually live in residential care? I have been trying to avoid this route for my son (now 24) but maybe it is holding both of us back in some ways. It is hard to know what the best thing to do is, i suppose you know when its right? What do people think?

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Hi Jeanne,I hope it all goes well for you both and the transition is as smooth as possible. It has got me thinking. Is it inevitable that our children will eventually live in residential care? I have been trying to avoid this route for my son (now 24) but maybe it is holding both of us back in some ways. It is hard to know what the best thing to do is, i suppose you know when its right? What do people think?

 

Hi Lisa,

 

I think we all have to think about what will give our children the best quality of life once we are no longer around. For us, it was sending my son to a residential special school, which equipped him to live independently as an adult, which he is successfully doing. For others, it may be looking at supported living options or full residenbtial care.

 

It's never an easy decision >:D<<'>

 

Bid :)

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I agree with you Bid it's never an easy decision to make but we have to do what is best for our child and I know this is definitely the best thing for Glen.

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Its a difficult call to make.

My friend and I both have sons with autism and severe learning difficulties. Both men are now 25 and we are in our 50's. Knowing what to do for the best is a nightmare for us. I know my son is happy to live at home with us but I dont have the energy anymore and neither does my friend. Our main sticking point is our other halves who are both shocked at the thought of sending our lads "away" I just want a bit of a "life" before I claim my pension.

Good luck Jeanne, Im keeping everything crossed for you!

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I quite understand Lory how you are feeling and thats how I feel. I am 50 and I to want a bit of a life but I'm lucky that my husband thinks the same as me. This placement if it comes off will be so good for Glen and us as a family. I can't go on much longer living as I am, treading on egg shells! Try and speak to your hubby and be honest with him about how you feel. Your son can always come home for weekends/ holidays etc and you can visit him, remember you will always be his Mum wherever he is. :)

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Our main sticking point is our other halves who are both shocked at the thought of sending our lads "away" I just want a bit of a "life" before I claim my pension.

I don't know if this helps, but one way I've heard others think of this is that you would expect a 25 year old to be living 'away' from home. Okay, so normally that would involve them having moved into their own place, but it's still away. You're not sending them away, you're helping them move on to the next stage of their lives which for everyone is to live away from home.

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Very wise words mumble I do agree with you. It could be the making of our youngsters which is what we have to think about, they come first.

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You all speak so much sense :clap: It is a very hard decision to make. If i could not manage his behaviour on my own anymore then i would have to consider it or if i came across somewhere that would be able to move him forward. A residential school placement is a better choice than an adult care home as then they are learning things and worked with rather than being babysat in a large house with others.Ive always thought there will be plenty of time for that when im dead. Finding the right placement has to be the key and it sounds like you have Jeanne and that is just great :clap:

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Thanks LIsa, I just hope it all goes ahead as each day is getting worse I'm afraid, it is very sad to see as a parent. I am hoping the social worker is going to see the placement on Friday although she hasn't confirmed today as I thought she would so I am hoping she will confirm tomorrow. I will keep you updated. :)

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A residential school placement is a better choice than an adult care home as then they are learning things and worked with rather than being babysat in a large house with others.Ive always thought there will be plenty of time for that when im dead.

I just wanted to add a little balance to this. I'm quite sure there are adult care homes like this, but they're not all like this. My brother is in a home with only three autistic adults due to his level of need, and he does have a daily programme of activities. It's not perfect in a number of ways, but it's certainly nothing like the large group babysitting model that seems to pervade ideas of what care homes are like. :)

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I agree with Mumble. Where I work we have an adult care home as well as a school, and the adults live in small groups in little bungalows and they are always out and about.

 

One thing I have always thought, I would prefer to help choose the placement, rather than it being done by SS once I was gone.

 

Bid :)

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Well I have been in the good position to have picked out where I wanted by son to go and it seems everyone is now aggreeing with me. Education are certainly on side, Glen's current school cannot meet his needs so that was a plus for us to get them on board. The social worker is off to visit the plaement tomorrow and will be getting back to me on Monday, its all looking good. Just need to pin them down to a date so that Glen isn't kept waiting for months. The SW thinks its more likely to be by the end of May so that would be fantastic but I wouldn't believe it until I've been officially told that! I will keep youdated.

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Thanks BD, hubby and I are actually going to see the placement for ourselves on Monday so can't wait. I really hope this all goes through quickly and that we are not let down.

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Thanks Mel I really hope I can share some good news with you to next week also.

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HI, Glen has been home just over 2 weeks now after his inpatient assessment. He has totally withdrawn into himself and is self harming and also hitting out at us. He looks totally unhappy no matter what we try and do to motivate him.

 

Today the social worker came round, she has been brilliant I can only but praise her, she totally understands how we are feeling: we are living on edge all of the time when Glen is around, she said that she was amazed that I have managed to keep him at home this long (17 years).

 

Later this week the SW is going to visit the residential placement that everyone has agreed upon: young foundations in the midlands. They have their own classroom for young people specifically with autism, we are very impressed with what they have to offer. The placement would be for 52 weeks. It looks like it will now go ahead as long of course that all goes well the the SW visit to the place. I will keep you updated.

 

We are battling too, my son is 16, unfortunately we haven't been offered a thing either, not even inpatient assessment as yet they want to try medication to control. Summer/half-term nothing from SS either we are just left to get on with it, despite both us and the school backing official complaint the Social services are not up to the job, and unable to understand the needs either of the parents or the child. Did you commute to visit your child ? at one point the consultant talked about an assessment 200 miles away ! This would make it virtually impossible for us to commute at all. There is no point on assessments UNLESS an therapy has also been worked out and it is ongoing. To simply 'diagnose' and then put the child back in the home with the parents still at exactly the same point is pointless. We had the same issue with respite, what was the point of it in terms of helping the CHILD ? Just give the parents a break full in the knowledge they are going to get the same again on return, again pointless and stressful. You would just spend respite time worrying about the child's return... and to expect same old. I hope it works out for you and your child, I am crossing everything the medication works, but more doesn't seem tohave made much effect as yet, we don't get violence, against us, but the potential to hurt himself is real...

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Hi yes we did communite to see Glen whilst he was away as much as we could but he was 270 miles away!! We have actually just come back from looking at a potential residential placement for Glen which is much nearer to home. We like it very much, not sure if he'll get it or not as yet. Tomorrow we have a meeting with social worker so hopefully will find out more, she and someone from education have also been to see the home. I think it would be ideal for Glen and his needs, up to now Glen has been 'managed' by everyone that has come in contact with him, ie. parents, school, respite, inpatient assessment etc and it doesn't work, Glen needs HELP, someone that will actually work with him to help with the issues he has and we think that this place where we went today will do just that. If funding is agreed then Glen would be there for 52 weeeks initially, we would go and visit him and he would come home for long weekends or a week if he could cope with it. So fingers crossed it goes through.

 

I do think that is what you should consider melow you and your wife need 'to have a life to' you know, thats how we've been looking at it recently, also we want the best help possible for our son which he won't get at home. Medication will not work on its own in fact it's how a child/young person is managed and worked with that will have the best results not medication, it just helps in some cases but not in all.

Edited by JeanneA

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Absolutely.

 

I remember 20 yrs ago when son was diagnosed being offered medication and respite. Nothing else. No therapies. It seems very little(if anything)has changed :(

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Well had the meeting this morning with the social worker and still no date as to Glen being admitted to this residential placement. I was told it was highly likely that it would happen but she was still waiting to hear from her superiors. We are keeping the pressure and will do so until something is decided and hopefully quick.

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Hi oxgirl yes its looking hopeful but we really need a date and soon, its so distressing seeing how much Glen is deteriorating every day.

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Hi yes we did communite to see Glen whilst he was away as much as we could but he was 270 miles away!! We have actually just come back from looking at a potential residential placement for Glen which is much nearer to home. We like it very much, not sure if he'll get it or not as yet. Tomorrow we have a meeting with social worker so hopefully will find out more, she and someone from education have also been to see the home. I think it would be ideal for Glen and his needs, up to now Glen has been 'managed' by everyone that has come in contact with him, ie. parents, school, respite, inpatient assessment etc and it doesn't work, Glen needs HELP, someone that will actually work with him to help with the issues he has and we think that this place where we went today will do just that. If funding is agreed then Glen would be there for 52 weeeks initially, we would go and visit him and he would come home for long weekends or a week if he could cope with it. So fingers crossed it goes through.

 

I do think that is what you should consider melow you and your wife need 'to have a life to' you know, thats how we've been looking at it recently, also we want the best help possible for our son which he won't get at home. Medication will not work on its own in fact it's how a child/young person is managed and worked with that will have the best results not medication, it just helps in some cases but not in all.

 

I don't really think medication is any answer either, It is the 'official' medical view medication will help him cope, and playing to our fear of losing him to be frank. I've voiced objections in that medication in itself is NOT the answer, there has to be in-depth occupational therapy and skilled people working with the child. I certainly feel we are OUT of our depth or approaching it, we cannot be anything but his parents, and engaging an child that doesn't want engagement from anyone 24/7 frustrates and upsets, as well as putting him on an the edges of frustration, which is going to make him worse. I don't want to be his carer I want to continue being his parent. It's settling to a routine that is going nowhere. We cannot go on with our 'life' until we know he has a stab at one for himself. I feel time is pressing now, at age 16.... I think you are very brave to allow the child to be helped elsewhere, I would only do that with guarantees and an system in place I believed would help my child. Although I do have the 'luxury' of not being a target for physical stuff. An assessment is just that, it doesn't then follow therapy etc goes next, we have to fight every inch of the way.... My son diagnosed at 3, but it took 8 YEARS before they gave him special education.... I don't want to spend the next 8 doing the same. He never made that 8 years up.

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Glen has gone to his residential placement he was picked up about 1pm today. It has been one very emotional morning. I know I have done the right thing for Glen, but it still was a very hard decision. However, I couldn't have got through another day watching him deteriorating so much, it's been heartbreaking to see the way he has been recently. Glen went with the staff of the home without a problem, but then he does like rides and rarely refuses to go, just hope he is ok when he reaches the home. I will keep you updated. God why does it have to be so hard being a parent?

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Oh huge hugs Jeanne!! >:D<<'> >:D<<'> >:D<<'>

 

Remember you are doing this for his long-term future.

 

Try and be gentle with yourselves, it's bound to be a time of very mixed emotions.

 

Bid >:D<<'>

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Thanks, I am struggling but that is to be expected. I know I have done the right thing just hope Glen does go on to progress. It would be nice to see a happy boy again! :)

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Hi Jeanne -

 

Not really much anyone can say, is there? :tearful:

I'll just reiterate what bid has said and about the long-term agenda. Not much comfort in the here and now, but some, I hope. Let's also hope that you start to see some new positives really soon to reassure you that the long-term agenda is on track.

 

Very, very best to you and yours

 

L&P

 

BD

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Oh Jeanne, what can anyone say, it must be so hard for you. Be gentle with yourself and give yourself lots of time to get used to the idea. I'm sure it will get easier as you all settle down. >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'> >:D<<'>

 

~ Mel ~

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Thanks Mel I appreciate your kind comments. Glen seems to have settled in ok so far, long way to go though I know. It will be nice to see him in a couple of weeks time.

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Thanks Enid, it is very hard and he's only been gone since 1pm! Still I know it's the right decison, I pray to god that they can help him and I get the 'old Glen' back again. :)

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Its the whole long drawn out process youve been throw to get Glen to this stage that no daught will have an effect on how you feel about Glen now finally been placed in a provision that can meet his needs, it must be very distressing and emotionally draining because you may be feeling a array of difficult emotions that maybe are very confusing and conflicting and can lead us to feel guilt and shame but at the same time complete reliefe and that finally we can taker a breather and get our own lives back on a more normaility pathway.

 

for me Jeanne J going into long term respite was the pure reliefe mixed in with other feelings and emotions I miss J terribly it hurts daily, but knowing he is in respite at least (as his present resi school I feel strongly dont understand him or meet his needs) J is well looked after, happy and well, since been in respite he is in a much better routine, at home with me for long periods I cant get him out of bed in the morning but cant get him to bed in the evening, he becomes uncopertive and challenging at daily tasks and will resist activities and outings prefering to stay in, so it wasnt a healthy situation long term and it was very draining not to mention I had no time to meet my own needs which had a knock on effect on my own mental health also.

 

You will no daught worry, that is what we do, but I promise you in six months time you will see that this is for the best, my own personal situation has been hell and deverstating but at the same time their has been improvement, growth and the changes in J are so inspiring you cant help but feel you did the right thing.

 

 

Give it some time, take this time to do the things you couldnt do because your priority was meeting ALL of Glens needs, even in a crisis you kept it together after the system failed to ensure you had sufficient support at home in the Easter Holidays, so youve done amazingly well, Im sure the new specialisit provision will not only change Glens life, but yours tooxxx

 

JsMumxx

Edited by JsMum

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