Prudhoe Hospital

[mandyque]

For anyone who doesn't recall (I don't post very often, but lurk a lot), my dd is severely autistic, virtually non-verbal and has significant sensory issues. Because of this, all she wants to wear are swimming costumes and certain types of skirt. It's getting to be a bigger and bigger problem all the time and so she has been referred to Prudhoe hospital for a big sensory assessment and they will work on her with relevant therapies (nothing invasive) and techniques. She will be there for at least 6 weeks, coming home at weekends.

 

What I would like to know is, has anyone else had one of these assessments, what was your experience like and has it had a positive outcome?

 

I am hoping that they make recommendations for her to go to a more specialist autism specific school as she is 11 next month and would be going to secondary school in September. I really don't think that our local special needs secondary will be in her best interests as it is like a typical secondary school where the pupils have to go from one class to the next for lessons, lots of disturbances and sensory overload issues etc. Plus it is curriculum based, whereas I believe for dd this is not appropriate, at least until she has learned more in the way of communication and social skills. Without these, academic qualifications will be useless to her. With their backing I will have more power to push the LEA to change her statement to recommend this.

 

I want her to overcome her sensory issues as much as possible of course, but I believe that she needs to be in the right place to continue any work that is done at this stage.

 

I've been in touch with Parent Partnership who are going to help in any way they can, has anyone else got any thoughts on the matter or ideas of what I can do next?

[jlp]

I used to work at Prudhoe Hospital briefly many, many years ago but I think it was only adults then and it's all changed a lot since those days.

 

I hope you get something positive from the assessments. 6 weeks is a good time to really get to know your dd so hopefully they will get to know her well and be able to provide detailed reports to say exactly what she needs.

[mandyque]

I used to work at Prudhoe Hospital briefly many, many years ago but I think it was only adults then and it's all changed a lot since those days.

 

I hope you get something positive from the assessments. 6 weeks is a good time to really get to know your dd so hopefully they will get to know her well and be able to provide detailed reports to say exactly what she needs.

Thanks for the reply, they do take children nowadays, in the Ridings section. They've got sensory rooms, classrooms and all kinds of different therapies and activities. I think I'm having separation anxiety over it She hasn't a clue about any of it, there's no way of explaining to her as she is low functioning and doesn't understand what she can't see. I've been told to expect difficult times while she is there, especially as any strategies they put in place, I will have to enforce at home, and it's so much easier to introduce new rules in a new place than to change the ones she is familiar with I know it's something we have to do, it's most definately in her best interests, especially as school don't particularly want to understand her sensory issues and tend to write her off as naughty

[mandyque]

Well, we've got a date when dd is going at last, she's going on the 5th February. Wish me luck, it's going to be a difficult time

[Nic m]

Good luck and i hope you get some answers

Nic

[baddad]

Quickie Mod moment

 

any info people can pass on to Mandy really appreciated, but via the PM system please if school or LEA specific...

 

Ta muchly!

 

BD (for and on behalf etc...)

[forbsay]

Good luck

 

Take care

 

Forbsay

[elun1]

<'> Good luck, it sounds really interesting. My ds also severe autism and major sensory issues. If you get time would you mind pming me to let me know when you find out more?

Thanks Elun xx

[Kathryn]

Good luck with this, mandy and stay strong <'> . It sounds like a really in depth assessment.

 

K x

[Clare63]

Hope the assessments go well Mandy and that you get lots of support finding the appropriate secondary education.

 

<'> <'> <'>

 

Clare x x x

[Bullet]

Sending out lots of postive thoughts that it gives her the help she needs <'> .

[mandyque]

thanks for the good wishes everyone

[mandyque]

Right, I've been to visit the local school and I'm still not happy! If dd went there she would be in a class where there are about 11-12 older boys and only one other girl. The ratios are 3 staff to 10 students, whereas currently she is getting 1 to 1. At the school I want, she will be in a class of 7 students all within a year or two of her own age, with 4 staff. I need someone Official to say that 3/10 is not good enough, and a class with much older boys is unsuitable. Especially when I know that at least one of the boys makes me very uncomfortable, and so does his father!

 

I also need to work on the fact that I want her in a place which can offer residential care when the time comes. This school has no residential facilities.

 

The Parent Partnership officer who is working with me has warned me of all the pitfalls and problems we're going to have, the local school may be given funding for an extra member of staff, they might simply say no way, you must send her to this school, it is good enough. But I am collecting evidence, I have now seen what they offer and I am not happy with it. The school is HUGE compared to the specialist one and I just feel that she won't get the same level of care there at all.

 

I'm hoping that the assessment at Prudhoe will echo my feelings and make recommendations for the specialist school now, fingers crossed!

[Sallya]

Hi Mandy,

Just before Christmas, the LEA were trying to get my son into the mainstream secondary school for this Sept, I visited the SENCO with all his paperwork, previous letters from the LEA saying that they agreed a specialist placement would be suitable, and the other letters where they had changed their minds and were looking at mainstream.......she agreed to say to the LEA they couldn't meet his needs in mainstream, and contacted the LEA that day. It worked well, effectively closing that door, and the next letter I got from the LEA was a letter confirming a place at special school. It might be a good tactic for you to try!

s

xxx

[mandyque]

Thanks Sally. The problem I have is that the local school is a special school (general as opposed to autism specific) and they are saying that they can take her, and can cope with her. That may be, but I am not convinced that it is in dd's best interests to go there, I don't believe they can provide as well as the out of area school. The other issues surround her future, the local school don't provide residential care, the out of area school does. It's not something I will be going in for straight away, but I certainly want her to go residential as she approaches adulthood. The post-19 facilities are excellent, whereas the local ones are non-existant and I feel it is in dd's best interests to be in the right system as early as possible so that changes are kept as minimal as possible.

Edited January 21, 2008 by mandyque

[Karen A]

Hi mandyque.IPSEA have been very helpful in supporting parents and providing information in battles over appropriate school placement.They have a helpline and it may well be worth contacting them for advice.Karen.

[mandyque]

Hi mandyque.IPSEA have been very helpful in supporting parents and providing information in battles over appropriate school placement.They have a helpline and it may well be worth contacting them for advice.Karen.

Thanks Karen, I will see how things go with Parent Partnership, if I'm not getting any joy I will enlist the support of IPSEA. I have a couple of other options too

[mandyque]

Well, I left her at the hospital today, she seemed to be fine, pop music on the TV, wooden train set all over the floor, home from home I was a bit cheesed off that I had to go through everything again with the doctor when one of the nursing staff had spent 2.5 hours last weekend writing up all sorts of in depth background info, but it's done again now, we'll just have to see how it goes. She was happy to stay when I said goodbye so that was ok, I had to swallow back my own sobs though That in itself worries me a bit though, that she wasn't bothered about being left with a load of strangers in a strange place *sigh*. There's always something isn't there

 

I'll see her again on Friday, but it's going to be a difficult time for us all, not least when they send us home with new things to try eek!

[elun1]

<'> <'> Hope you're ok, hopefully it will give you some answers

Elun xx

[Karen A]

<'> <'> <'> I hope the next few days are ok and that the work you are given is managable.Karen.

[mandyque]

Well, she's home for the weekend, she seemed quite surprised to see me, I wonder if she thought that was it and she was staying forever?!?! Ah well, she's been happy enough since we got home, although I'm shattered from the long drive. They've managed to keep her off the swimming costumes, apart from actually going swimming, but it hasn't been easy for them. They told me to hide all the ones I have at home so I have, but the first thing she did as she walked in the door was strip off the alternative clothes The challenge will come when I try to take her out myself. They advised to buy some more UV tops, she had one already and chose to wear that so I have managed to get two more, not that I can afford them but needs must. The cheapest I could find were in Next Directory I'm a George at Asda girl, Next is posh!!! And out of my price range I guess I'll just have to hope Family Fund help me with some clothing money.

 

I'm just hoping that she won't be too upset on Monday when I drop her off again

[Karen A]

<'> <'> Karen.

[lorryw]

Hi Mandy,

Have a look on ebay. I just had a quick look searching under "UV top" and they had quite a few (including some rather strange things).

I hope everything goes well tomorrow.

love Loraine xxx

[Kathryn]

Hope next week goes well, Mandy.

 

<'>

 

K x

[mandyque]

I'll have a look lorry, thanks

 

We've had a pretty normal weekend (normal for us!) but it's back to the hospital tomorrow so we'll see how things go

[mandyque]

Well, she went back today, I was worried all weekend that she would get upset but she didn't! I bought her a new bag especially for this so she knew where we were going before we got in the car, she never flinched and got in the car happily. When we pulled into the grounds she said 'oh yeah!' The only little blip was when we couldn't get parked outside and had to go back up the road to another parking area, she got a bit confused and didn't want to get out, but I said we could go for a walk down and she was ok after a minute or so. Went inside and she knew where to go and just got some jigsaws out and started doing them. No problem at all I'm glad she's happy there, I was so worried about her going and not being happy away from home but she's really ok

 

I am starting to wonder though, one of the things which they were talking about was whether they felt she needed a 24 hour routine, it does seem to be suiting her well, which brings up the possibility of residential schooling. Hmmm, something to think about, especially as the school I want her to go to has residential facilities.... I just feel guilty, like it sounds like I want to get rid of her

[Karen A]

Hi Mandyque.I just caught up with your last post.I am glad the return to hospital was ok.It sounds like you have some things to think about. <'> Others here have been through the ups and downs of thinking about residential when a 24hr curriculum is an option... so you are not alone. <'> <'> Karen.

[Deedee]

Hi Mandyque it sounds like she's doing really well you should be very proud !

It leaves such a gaping hole in our lives when our kids are not there doesn't it??

I suppose it's because we are used to it being so full on all the time..I hope she continues to enjoy her time there as it makes it easier for you knowing she's happy <'>

[mandyque]

ooo haven't posted in a while, here's a little update

 

She's in her 4th week there now, comes home tomorrow for the weekend, then back Monday. She's settled extremely well, they have stopped her wearing swimming costumes and she is also wearing trousers again, she hasn't worn trousers in a few years! She is being assessed by an OT to judge how she is with sensory issues, a dietician to see if we can improve her eating habits, SALT and various other professionals who are all observing and working with her to try and make things better.

 

It has brought up an issue I was hoping not to have to deal with just yet though. From the very first week she was so happy, so settled, and she has learned so much with the specialist staff implementing a 24 hour routine, I am seriously considering residential schooling for her now. It's a heartbreaking thought but I really want the best for her and I am starting to believe that this is it. I would much rather make this kind of decision with a clear head as I am now, than to leave it and for things to become unbearable and for us all to suffer before I admit that I can no longer cope and the decision is taken out of our hands. It would also help in my case to get her into the specialist school as the local one doesn't provide residential care. So, at the moment there are lots of positives, but a lot to still work on and think about.

[Bagpuss]

Mandy, I've only just read through this thead. So many ups and downs........and difficult decisions to make <'> <'>

[lil_me]

Mandy just been reading up on how your little DD is getting on, after meeting you both I am stunned that they have managed to get her into clothes, wow! I remember what happened to the ones she 'was' wearing at Lightwater Valley She's such a lovely happy little girl I know the decision you need to make isn't an easy one at all, I don't envy you in any way. I know as her Mam you will do your best for her, she's wonderful and you cope so well with her. I am pleased to hear of the huge progress she is making, wishing you both well. One thing I will say is the school may be very different when it comes to care, how she will settle etc compared to the hospital unit. IF the option of residential is available for your little treasure and this helps to gain a place at the prefered school then I would use it to obtain more support for the place even if you don't choose to use the residential facilities.

[mandyque]

Thanks for the replies again Lil Me, she's not so little any more, she's 11 now and fast approaching my dinky height of 5'2"! Ah well, if only I could grow a bit more too

 

She's home for the weekend again and they've got her out of the tattiest pair of shoes you have ever seen, which she had got fixated on, and into a nice new pair which don't have a hole in the sole We are also, with a bit of difficulty, getting her to wear a vest under her clothes, rather than over We need to sort this one out pretty quickly really before she starts to develop properly and needs bras

 

I can't believe how fast the time has flown, she has two more weeks before the review meeting to decide whether she should stay longer, I suspect they may do as there is still a lot of work to be done. So at the moment it is a bit 'wait and see' but seeing the progress she has made already is so good and reassures me that sending her there has been the right thing to do

[Karen A]

<'> <'> I have been wondering how things were going.It sounds like you have a lot of things to consider.

It is great that Prudhoe have been able to get so much professional involvement.Karen.

[Kathryn]

So good to hear of your daughter's progress, Mandy, especially over the swimming costume issue which I remember you posting about a few times.

 

Big decisions to be made in the future, and I'm sure you'll make the right choice when the time comes, but for the moment it's great to hear that she's happy and settled.

 

K x

[mandyque]

Blimey, I didn't realise I hadn't been around in so long! Update time methinks!

 

Well, dd was given another 6 weeks at the hospital so she is still there Mon-Fri, for at least another 2 weeks. I suspect they will be looking at discharging her at the next review meeting at the end of this month. She has come on leaps and bounds, it's quite amazing to see the difference in her in such a short space of time. She is wearing most normal clothes now, still having a few issues around vests but she hasn't worn a lycra top this week at all! She is making more of an effort to wash herself in the bath, something she never did before, she tolerates hair brushing and is much more settled on the whole.

 

I have noticed that she is not so quick to run away from me any more either, and is starting to follow if I walk away

 

As for the schooling, I am now in the process of taking the LEA to tribunal to get her a place in the residential school I was wanting her to go to. I'm convinced now that the 24 hour routine that she is currently getting is suiting her much better than anything else we have ever tried, and the school I want for her is infinitely superior to the local one.

[Kathryn]

Wow, that's progress Mandyque - wonderful news! If only you didn't have to face a battle now to prove that she needs this kind of environment. Good luck with it.

 

K x

[mandyque]

Well, I've just had a phonecall from the speech and language therapist at the unit where dd is at the mo. She has done assessments and has concluded that on the whole dd's speech and understanding is lower than 12 months. Compared to her general development 'age' of 2.5-3yrs this is a significant difference. While it's not surprising on the whole, I was a little shocked at her being so low. The deficit is mostly to do with her understanding, when others try to communicate with her, and she can't generalise with different people and situations. She was also quite perturbed at dd's school SALT not working with her at all and she is of the opinion that school do not understand the true scale of dd's speech and language difficulties.

 

I chatted to her about schooling, and how the LEA want her to go to a general special needs school and how I felt that a specialist autism school would be much better for her and she agreed wholeheartedly. So there's another little piece of evidence to help with the tribunal, I can only continue to hope that we have enough.

 

They are having another review on Friday, where they should be planning her discharge, possibly next week! There is such a change in her since she started there, she's done so well and they are fantastic people.

Edited April 22, 2008 by mandyque

[Karen A]

Karen.

[mandyque]

And again, I'm a serial no-shower, but I finally have news!

 

We went to tribunal on 18th July and spent a very long day going through all the files, only to discover that the LEA representative hadn't brought the costings which needed to be considered So it was adjourned until 7th August. We then spent another few hours on the 7th sifting through the rest of the evidence and were assured that we would get the decision from the tribunal within 2 weeks. So that would have made it 21st August. I still hadn't heard anything last week, so I rang every day to bug them for answers, eventually I was assured I would get the report by email on Monday of this week. After a number of phonecalls the report still hadn't appeared, but we managed to get the named school out of them. It was the one we wanted Got the rest of the report by email this morning, a paper copy is coming in the post very soon, but she has a 52 week residential placement at the perfect school for her and I am over the moon She'll come home most weekends, but this is exactly what she needs

 

Of course there is a big transition ahead of us, but I'm so relieved, it's all over, we got the result that dd needed, and she will finally get the best in education and care that she deserves We've fought long and hard on this one and it feels like such a great achievement

[Enid]

wow, read your thread last time you posted, you have done soo well, givves the rest of us hope! <'> <'> <'> Enid