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Please help - really stressed out and feeling unsupported

(21 Posts)
bodenbiscuit Tue 07-Jul-15 17:55:09

My daughter is 13 and has severe ASD. Throughout her life she has had alternate 'phases' of being very passive and then having very challenging behaviours.

I just feel that the people involved with her case are not being very helpful. Lately they have been suggesting she moves to a residential, ASD specific school. They will not help me with the idea that she goes to an ASD specific school and still comes home at night. I don't want her to go away from home yet - she's only 13 and she's very attached to me of course. Every time I see her doctor, he says something completely different and he's really inconsistent.

I asked her ABA consultant, who worked with her for 7 years to come and look at her. He said that he doesn't think the school is the problem. He thinks she has undiagnosed Tourette's syndrome and that that is the reason why she has this compulsion to kick out all the time. She is a highly complex child and I think it is very
Iikely that she does have other disorders alongside her autism. But everyone involved with her case is being really rude and patronising and saying so what if she did have something else - what difference would it make? I feel like they are saying 'ah well, she is so disabled she's a lost cause so let's just put her away'

I have to keep having meetings with CAMHS and with her SW and I feel the meetings just drain me and don't help me or my dd in any way.

Can anyone else identify with this?

Tissie Tue 07-Jul-15 22:31:39

I am deeply sorry you are in this difficult situation. It's just not helpful to have another suggested diagnosis when what you you need is support to solve your current situation.
Take a moment to think about who is most worried about her going away? Is it you rather than her? Go and look at the schools suggested and find out how often they can come home - is it every weekend or just once a month? Howl long is their term? It's probably shorter than mainstream schools.
It must be awful to feel people are patronising you and writing off your daughter. They would most likely be mortified to think that it the impression they are giving you. It's far on in the year and people are very tired. Not an excuse I know.
Please make the visits then you can discuss things from knowledge. Wednesday 15th July on ITV at 10.40 is a documentary about a residential school for girls with ASD. It might be worth watching. Good luck. I shall watch this thread and hope to hear how you have got on.

bodenbiscuit Tue 07-Jul-15 23:48:21

Thank you - I will watch that. The problem is though that if she does have other underlying issues that are not being addressed then she should not attend any school where they do not know the full picture. It may be the case that in the long term a residential school could offer her the support she needs. But I think we need to know all the facts. And if he says that it is not behavioural, I have good reason to believe and trust him.

However, I think that some people may feel that it may be easier to get the LEA to agree to pay for moving her if it can be argued that she needs a residential placement iyswim.

bodenbiscuit Tue 07-Jul-15 23:50:33

I like the school that they have recommended. But it is near enough for her to have a day placement there. I have visited the school before so I have no problems with that.

Icimoi Wed 08-Jul-15 08:31:29

The trouble is, if you wait for diagnoses before sorting out her education you may run out of time. Also, the good specialist schools are well used to dealing with a range of difficulties so it won't necessarily matter if you haven't finally pinned everything down - in fact one or two of them have their own psychiatrists or clinical psychologists attached, so it could help in getting a quicker diagnosis. The benefit of residential schools for children with ASD is in part not having to deal with the transition between home and school every day, as well as socialising with other children who are more on their wavelength and having people with expertise available all the time.

I'd strongly suggest you go and look at a range of residential schools. Sending a child to one really isn't "putting her away".

bodenbiscuit Wed 08-Jul-15 08:48:00

But the person who has worked with her the longest and who knows her well says that in his opinion she won't be any different anywhere else unless the cause of her behaviours is known and addressed. He basically thinks that she is likely to be on the wrong medication.

I know what the arguments for residential provision are. But I think 13 is younger than I would wish for her to go into an institutionalised environment. Not all children with ASD are the same and my dd likes novelty. She enjoys going to a play scheme on Saturdays. She loves going to visit her family in Wales. She does already have 2 overnight respite nights a month and when she goes on that it feels strange not to have her.

If the provision is the issues, which not everyone agrees with anyway, why can't she go as a day student?

bodenbiscuit Wed 08-Jul-15 08:48:31

We are prepared to pay for her to have assessments of necessary so that we don't have to wait.

2boysnamedR Wed 08-Jul-15 09:38:03

I'm no expert but it if you didn't want her to board wouldn't parental preference come in here? No one can force your dd where don't want her.

Maybe your warn down too. Can you suggest that you would try the school but your not ready to entertain residential at this point?

Residential has been suggested for my 7 year old so I see your point of view as it's not a option I would entertain. I don't think he could cope with that at any age as that's "him" and like you say they ate individual. However if he found somewhere he loved when older it might be option if that was his choice once he got to know a placement.

adrianna22 Wed 08-Jul-15 09:41:29

Personally OP, I think it does help
If you have another diagnosis. Though, I do agree that you shouldn't wait to get a diagnosis before you sort out provision, unless you want her to be privately assessed, which is obviously much quicker.

adrianna22 Wed 08-Jul-15 09:48:48

Posted too soon. Darn phone!

My DS has autism and verbal and oral dyspraxia. The ASD schools in my borough don't really have the facilities or expertise to support children who have an additional diagnosis of this kind of speech disorder. I wanted a school that would accommodate DS ASD needs as well as his speech needs .

The thing is, when I was looking around for special schools, DS didn't have that diagnosis by then. I just looked at his needs and see what school is best for him. Also, if you want your DD to go to a specialised special school, you nee a diagnosis.

bodenbiscuit Wed 08-Jul-15 09:52:23

I think it's possible the social worker feels that it would be easier to persuade the LEA that a change of provision is necessary if a case for residential provision were made as it is going to cost them a lot more money. However, if autism specific is the issue, then it would be possible to argue for that in my opinion. The SW also said that it can take up to a year to put such provision in place.

One thing that is annoying me at the moment is various people (who don't know my other children) saying that my other children need their childhoods and that it would be better for them if my older dd was in a residential school.

bodenbiscuit Wed 08-Jul-15 09:53:57

My daughter already has a diagnosis of classic ASD but her cycle of behaviours has been going on since she was about 7, which was also around the time that she developed epilepsy.

bodenbiscuit Wed 08-Jul-15 09:58:13

Thank you adrianna. Yes that is how I feel - I really don't see how you can decide what provision is needed if you don't know what the needs actually are.

JoC0913 Fri 14-Aug-15 07:26:26

Hello, sorry if I'm posting to the wrong place but this is my fist post on here! My 2.9 month old son was diagnosed on Monday with severe autism. He doesn't say any words and can be aggressive. He has lots of stimming behaviours too. I am now looking into which therapies may be helpful for him. A lot of what I read mentions ABA. Does anyone have any experience with this? Thanks very much

Icimoi Fri 14-Aug-15 10:00:08

Is there an ASD specific day school near you?

JoC0913 Fri 14-Aug-15 16:21:22

He does attend a mainstream pre-school 2 mornings a week (term time only!) he had started to settle there before they broke for the summer. I was just wondering about other therapies that may help him.

Ineedmorepatience Fri 14-Aug-15 17:05:18

JoC0913 you might be better starting your own thread with a title about ABA or other therapies, that way you might get the people with the right knowledge to help you smile

The board is quiet at the moment though because of the holidays.

JoC0913 Fri 14-Aug-15 18:25:40

Ok thanks! I now just have to work out how to start my own thread!

Ineedmorepatience Fri 14-Aug-15 20:05:34

I have found one you started about ABA now and replied along with someone else smile

Anomia10 Mon 17-Aug-15 19:50:34

A residential school is not "an institution" these days. The students typically live in a flat, like something out of an IKEA catalogue, probably about 6 of them plus staff. They have a choice of activities every night either on or off site. They also normally do independence skills like cooking, cleaning, shopping, etc.

Most of the students are very complex - they have to be to get the funding, unless their LA is very easy going (rare ime). A LA can make the decision and agree the contract in a few days, if they want!

JoC0913 Tue 18-Aug-15 08:00:59

Inneedmorepatience .. Thanks, yes I've had some good advice, I just need to work out if ABA will work for us! (Had some negative advise too!). Also I am now looking for a private OT, they seem to be like gold dust!

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