Sazale
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Posts posted by Sazale
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Looks like we're going to be joining you! Good luck x
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I'm in a similar position with my dd 13. Mainstream is not working. She profiles PDA and her demand avoidance is classed as challenging behaviour. She's not physically violent and doesn't swear but if she's not gonna do something it's a challenge to get her to comply. We're at proposed statement stage and no schools are suitable although panel are going to meet to see if they can come up with a way for mainstream or generic special school to work. I've made contact with the nearest specialist provision and they were concerned over her behaviour but after a long chat they concluded that it's a symptom of being in the wrong environment and inadequately supported and have agreed for us to visit. Could that be the case for your dd? x
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We got a ###### proposed statement. Managed to get it changed (very easily) to one a lot better that also recognises and provides for her demand avoidance. They went from not specifying any hours to a 25 hour, low incidence needs amended proposed statement.
After careful consideration we decided to bane the local lea special school whose remit is physical/medical but will take pupils classed as vulnerable who are struggling in mainstream. It was our only option other than mainstream, which is not working, as all over provision either involves feeding into mainstream secondary or dd was too academic. We didn't want out of area independent provision as its an hour commute each way or residential. Tbh we felt it may not work but hoped it would.
The lea sent the papers off to current mainstream and the special school we asked them to. Both have come back with a list of concerns that they have and tbh they are just confirming what we felt but had no proof of. It is due to go to panel in August to see wether there is anything that can be done to overcome the ussues. This has now given us the kick up the ###### we needed to realise our feelings were right and that we need to get the right provision even if this means residential.
I'm in the process of contacting 2 independent schools to see if they can meet her needs. I know that there are other children in both these schools funded by our lea so I'm guessing that gives us a better chance as a president has already been set. I'm also hoping that neither school has said yes will also go in our favour.
Do you ask the lea to send the papers to both these schools, like they did the other 2, or does it work different when they are independent?
Thanks
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I'm having a similar dilemma, justine1. My dd 13 is not coping in MS and we have just had a provisional statement. There aren't any special schools that can take her as she's academically at age 15 apart from 1 which is full and may not take her as their remit is medical/physical disabilities. Emotionally though she's functioning around age 7 so mainstream is no longer an option. The closest independent school appropriate for her needs is over a hour away with no traffic and she's not a good traveller. If it was closer I'd be fighting for it but it fills me with dread to think of residential. I also have 2 other children who would prob benefit from the break in meltdowns and demand avoidance. I really don't know what to do.
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Thanks Sally, I'll prob be back asking for advice once it arrives!
I've received an email today from the councillor I copied into the email who is the lead cabinet member for safeguarding children. He has said that he's aware the complaint is being dealt with and that he is taking a personal interest to make sure my complaint is dealt with in the appropriate manner and timescales. He's cc'd the director of safeguarding children and the performance and quality manager for children and young people services into the email. Looks like my complaint may have got someone's attention!
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Thanks Sally
I have also complained in the letter that the social worker also refused me a carers assessment. Do you get a copy of all the reports with the proposed statement as I've only seen the CAMHS one so far?
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I got a reply today telling me they were looking into my complaint and would be in touch shortly. I know school will support us with how vulnerable she is and how challenging her behaviour is. We've also found out after I sent the complaint letter that the LEA have agreed to statement my dd.
The thing that makes me laugh is that the workers at school that support my dd are having to be changed to give them respite from her and vice versa as her demand avoidance is increasing. So the staff who are paid to support her get respite but social services say no care needs!
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I emailed my complaint to the director of children's services, the lead cabinet member for safeguarding children and families and to the complaints dept yesterday!
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I've got a feeling my dd 13 has these sessions once a week at school but I haven't got her iep so I can check (I've sent it to DLA unfortunately) but it sounds like it looking at the link and I'm sure that it is referred to as that on her iep. My dd loves it! They do lots of messy play with her as she loves it and are working on brushing her hair with her as she refuses to have it brushed (combination of demand avoidance and sensory issues)! The SENCO plays with her and also let's her do her hair.
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Well done Sally for complaining and getting the assessment. I know I should complain but keep putting it off as not sure if ready for the hassle!
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Thanks guys. You've both voiced what my gut feeling was. I'm gonna play the line that I don't know what setting would be the best because I don't know fully what her needs are which is why I requested statutory assessment in the first place.
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Cheers hun x
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Although was said in front of other professionals so if needs be could probably prove it.
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They may directly ask you "what do you want", and you need to deflect that and say "it is not about what we want, it is about our daughter's needs being met in a placement where she will be able to cope and where she will make progress in all areas of development and where she will be in a similar peer group."
I'll make sure I include that phrase in the statement. I think she asked me to do this because she asked me out right what educational setting was I thinking and I told her I didn't know. None of the ones I'd seen seemed to meet her needs and I think that's the line I'll keep taking coz tbh I haven't found anywhere yet. We have had a clinical psych tell us mainstream no good and ed psych tell us the generic special school no good but I don't have that in writing.
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Thanks Sally
I was surprised they were asking for our views on the schools we have visited before it has even been to panel to agree to a statement. I'll not mention about the independent school we're going to visit next week then. I'll just talk about the lea ones and state why I felt they couldn't meet DD's needs.
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Ive just had a telephone call from my DD's sen case officer at the lea (I didn't know about her till today). She told me my DD's case will go to panel on the 29th May. They had agreed to assess and reports were due in on the 9th May. She asked me about what school I'm thinking of or my dd. she knew I'd been to see the ASD unit and generic special school and wanted to know my opinions on those and also my views on mainstream. I told her I was unsure as concerns also with each setting. She's asked me to provide a statement for panel on my views on each of the schools I've visited and the one she's in. Is this normal? I didn't think that they asked about schools until after agreeing to a statement. I've also received a letter today for a sen assessment with a Paed next month. I assumed they were just using her existing Paed which is why she'd not had an appointment before as reports were due in for the 9th May. I find it a bit of a coincidence that both these things have happened on the same day but also the same week as the panel have been sitting (a friends statement was due b4 panel on Tuesday just gone). I'm wondering if it has already been to panel? Any ideas chaps?
Cheers
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I don't have any advice hun but I wanted to say I understand how you're feeling and send big hugs your way. My dd is 13 and she seems to single out my 5 year old. I also have an 11 year old. I worry about the impact on them both. My 5 year old has hypermobility, a speech disorder, tics and is under assessment for ASD as he has social anxiety but I wonder how much of his anxiety is caused by the home environment. My dd doesn't sound as physically aggressive as your son but verbally she will really go to town on him especially if she's having a meltdown. She's in such a high state of anxiety all the time with problems with demand avoidance and has several meltdowns a day where as my little guy is so placid. She terrifies him and he will run and hide.
I just wanted to let you know that you're not alone xxx
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It sounds like your LA is better than ours, Sally44! I'm about to complain about soial services refusal to assess. There statement of purpose clearly states:
Children with a diagnosis of autistic spectrum disorder
Referrals will be accepted where the child’s autistic spectrum disorder seriously affects their developmental progress or their ability to access education, normal family life or where the condition significantly interferes with everyday activity. The young person’s autistic spectrum disorder will usually also be associated with severe learning and communication difficulties.
My daughter meets the criteria but the key wording that I'm going to focus on is that it says USUALLY not that it has to be and it says learning DIFFICULTIES not disabilities!
My dd has accessed the aiming high but her provision has come to an end for now and is back on a waiting list as the provision is or 6 weeks only. You don't go through soial services for that, I arranged it myself as no one told me about it!
im planning to take Hannah to the st Anne's one also ,see you there !
Will be nice to meet you after our virtual chats!
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I'm sorry to hear that she won't go back. I'm going to take Molly to the St Anne's one as she also loves swimming (not baths though lol)!
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I'm about to complain as I requested an assessment of my daughters needs and was told that because she accesses an ASD specific youth club once a week, I don't beat her, I protect my other children from her, no ones reported any concerns, she's not in special school and "only" has mild/moderate ASD then she won't qualify for direct payments. I didn't ask for direct payments, I asked or an assessment to see what support, if any, was available. She asked me to give an example of her difficulties so I said has not developed age appropriate self care skills. She actually asked me why I can't teach them to her! When she asked me what I'd like to be able to do I said to leave my house with my dd and DS and not need a 2nd adult due to her refusals to walk ad DS only being just 5. Her response was well if she won't walk for you she won't walk for someone else! I replied I can deal with the refusal to walk/meltdown but I can't also keep my DS safe at he same time! I said what about a carers assessment instead and she said I couldn't have one because dd not entitled to direct payments!!! She didn't speak to anyone apart from the autism communication team who she said sit behind her and all they knew was that she went to the youth club so she couldn't be that bad or they would be working with dd so therefore I should go to them for support. I then explained that ACT only support educational needs and only school can refer and that they hadn't referred as under Ed Psych and getting a statement so their input couldn't add anything. She never even read the CAF! She also didn't know that CAMHS don't support ASD as its not a mental health issue! Freaking useless!
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Jollypig, have you seen this one
Molly has accessed 12 weeks of it and she chose the open minds theatre company which do arts & music. She's on the waiting list for another block. They will collect them on community transport too. I'm going to look in to the scope one.
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Hi jolly pig. Is she eating it or biting bits off to chew? My dd 13 chews just about anything she can fit in her mouth apart from food! Food she breaks up with her tongue! She does a lot of sensory seeking behaviours and will chew things more if she is anxious. She sometimes forgets to take them out of her mouth and then ends up swallowing them! We have to monitor her like a toddler with things and check her mouth before bed!
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My sister in law offered to babysit last weekend and we nearly said no as couldn't be bothered! I even said to my other half we could do with renting a little flat so that when people babysit we can go there to rest!
Both me & my partner have noticed the same things (he works from home). It's amazing how it creeps up on you and you don't realise you're doing it!
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Different people are on the forum for different reasons.
When I first joined the forum, I felt that there was an inner circle of members who had known eachother for years, and in some ways felt that I was intruding.
Since them there have been more and more new people joining, and some of the members that used to post seem to have disappeared.
I personally tend to spend most of my time in the Education forum.
Simply because what we experienced as a family with our son is so recent, that I feel I can give relevent advice to other parents with similar issues. I basically do not want other families to go through what we did and spend years trying to navigate through a system that nobody explains to them and where other people within the LA maybe working against you, whilst pretending to your face that they want to help. It still makes my blood boil when I even think about it. And our experience was not the exception.
Your post is spot on Sally and I have been reading your posts on the education board with great interest as the LEA have just agreed to statutory assessment for my 13 year old and I've got a feeling they are going to put her in a provision because it's easy and not because it's the right place. It is posts like yours that help people like me who had no idea about ASD let alone Sen until 18 months ago and hopefully it will guide me through the pitfalls.
I suppose you can only appreciate things that are lighthearted, when you and your child are in a happier place.
I stopped going to our local NAS group because it always seemed to be about arranging "social" get togethers for the parents, when I could not even contemplate that. It seemed silly and frivolous compared to what we experiencing every day.
Imagine a scenario where I would say to my husband as he arrived home from work - "Hello dear, can you go upstairs and stop your son trying to stab himself with the sissors, I'm off out to an NAS pub quiz."
Not that I expect any group to be suited to my needs. But I stopped going, and I told the group leader that it did not meet any of our families needs at a time when we most needed any help or support we could get.
I think that everyone has something useful to add, and I think that everyone is entitled to their own opinion, without being shot down or rubbished by anyone else.
Now i'm off to nick some of my childrens' chocolate
How to get Social Services involved
in Help and Advice
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The complaint I made never got dealt with within the timescale so I have escalated it to stage 2, which they didn't like. The social services manager was due to see me last Friday but cancelled due to an emergency child protection issue, which I was fine with as cant be helped. However it had not been rescheduled, as promised by Wednesday and I still hadn't been told who the independent person was dealing with my complaint 10 working days into stage 2 so I emailed the cabinet member or safeguarding children on Weds evening explaining my situation and how dismayed I was. I also said I will be considering complaining about the way my complaint has been handled (I'm aware that I can complain to the government ombudsmen for failure to follow procedures) and low and behold I got a phonecall yesterday afternoon stating that both the complaints guy and the social services manager want to visit on Monday! Let's see what happens next!!