KarenT

Oh, and VERY sorry for all the question marks in place of apostrophes, which always happens when I type up in Word then copy 'n' paste. Why does that happen on this forum?! K x

Hello all I don't post much here these days so apologies for coming out of the woodwork to ask for advice, but needs must. Some of you might remember back on October we met with J?s psychiatrist about an ADHD assessment. He has Asperger?s (dx in 2006) and professionals have always claimed his hyperactivity, distractibility, impulsivity and lack of focus were associated with the AS, though we?ve always felt it went beyond that, hence the request for referral for ADHD assessment. Meeting with this psychiatrist (different one to those he usually sees at CAMHS) coincided with J being removed from school to home educate, following a series of incidents in school including a one-day exclusion for violent behaviour, largely caused by staff mismanaging him in a playground situation and restraining him after ?forgetting? he was autistic. Naturally he went ballistic with pretty awful consequences (I'm not condoning his response but it could easily have been prevented). At that time, the Head urged me to meet with J?s psychiatrist and consider medication (with the implication that we were thus far being noble in trying to do it all by ourselves by behaviour management, which wasn?t the case as we?d been asking for medical support for some time but always being refused). Following the exclusion, I met with the Head to discuss all the behaviour management techniques we were using at home (and had had considerable success with for two years leading to that point), however none were implemented in school and J continued to deteriorate rapidly. Much of the work we?d done with him was undone in that time, and the Head later admitted to me that she?d had no support in place for him at all. He regressed about 18 months in five weeks and now, nearly four months later, is still struggling to recover. Around that time we also applied for statutory assessment, which was rejected as apparently (in the panel?s opinion) J?s needs were being well met at his school, this based on ?evidence? gathered from education staff who had either admitted to not providing for him, or were too overworked to remember his specific needs, or in the case of the Ed Psych had never met him nor even attended meetings about him. Eventually we decided not to pursue an appeal as we honestly believe his needs CAN be met at SA+ if staff are prepared to support him - he doesn't need additional resources as outlined in a statement, just access to the existing ones. I don?t believe a statement would make much difference to general lax attitudes towards providing for children with special needs, and I felt that SENDIST would find the same. These were the same people the psychiatrist contacted about the ADHD assessment. We did our Conners and school did theirs, and we met with the psych afterwards to discuss the results. Although she said she could see why we felt J did have ADHD the school?s view was different so her conclusion was that he didn?t have it. I reminded her that she?d asked if there was anyone else she could approach for information about J but she hadn?t done so (local and national charities who have been working with him for several years and know him very well) but she insisted she did things ?by the book? and as such J didn?t have ADHD so she wouldn?t be recommending drugs for him ? with the new NICE guidelines she couldn?t prescribe without a formal dx. This was the extent of the ?full assessment?. We were in her office about five minutes and she ushered us out quickly so she could write up her report ? three months later we?ve yet to receive a copy. It was made very clear that we?d used up appointment time that could have been used by another family, and reminded that J had been observed by about 13 different professionals over the years and none had suggested ADHD in their reports. It was clear that she felt we?d wasted her time. So that was that, and once again we?re on our own trying to manage J without CAMHS support. Now, I know we?re in the early stages of Home Ed and it will certainly take some time for J to adjust and stabilize emotionally, but we are still struggling to support him with what we regard to be ADHD issues. There are days when he literally cannot function without an adult alongside him, guiding and prompting him with the simplest of tasks. He is distracted by empty air (most of what sidetracks him is in his head, rather than external), and his impulsivity continues to worry us. His anger problems, which he?d worked so hard to address, have returned in full force, though he's beginning to recogise the signs again and is working on that. We know that J won?t get a sniff of medication without a dx so we?re stuck with behaviour management. I?m well aware that ?you can?t teach until you can reach? but the fact remains, he can?t have drugs. The question is, how do we tackle this now? We?ve been trying to support him for years with guidance, reminders, reward and consequence systems, checklists and timetables ? the full works. But it?s just not sinking in and I don?t know what to do next. What behaviour management strategies do others use to support their children? J'smum, I need you now! Thanks, and truly sorry it?s so long! Karen x

Let's Talk About Sex by Robie H Harris is a great book and widely recommended. It's for about 8 plus I think. Very factual but with nice little cartoons that make it more fun. Karen x

PM me Mookamoo. I have a chart and game that might be helpful with this. Karen x

I can't help it, but it always makes me shake my head in disbelief when I see or hear people talking about home school communication books. I'm often pleasantly surprised that so many LEAs are happy to be open with parents, but it puts my own experiences (and those of other parents in this area) under the microscope and concerns me that other authorities can be so reluctant to engage with parents for the benefit of the child. I spent the best part of four years repeatedly asking for a communications book for J, at two schools, and had a catalogue of responses as to why I couldn't have it, all of which translated as "Well, the teachers can't really be bothered to fill them in". Essentially, in J's first school once he was across their doorway he was none of my business (not just him but the majority of children who attended there), and most of what went on there I learned several weeks after the fact, and never from official sources, by which time it would be too late to do anything about it because most of those involved had forgotten about it. It was even frowned upon for me to speak to teachers in the yard in the morning - I was told I should 'make an appointment' (impractical for urgent matters) or 'write a note' but that wasn't always possible if what I wanted to report had happened whilst trying to get him to leave the house in the morning, or something whilst walking to school. A few hastily grabbed words on the way in rarely did justice to the scale of the problem anyway, so everything was trivialised. On the other hand, it was always Ok for the teachers to approach me at these times, on their terms. Realisticallly, neither of the schools J has attended wanted much contact with parents at all, and 'working in partnership' was no more than something to look good on paper. I was even lied to on many occasions about incidents he'd been involved in, rather than discuss them with me openly and find a solution. It was easier for them just to despair of J and continue to dole out ineffective punishments. Lack of communication between school and home is one of the main reasons J is now home educated. You can't resolve problems if you don't know they're there, or if you choose not to admit to them, both of which were rife in his situation. At least now we have consistency and I know exactly what his problems are and can deal with them as and when they arise. Really pleased to hear that some of you have cooperative schools who are willing to use this clearly beneficial method of supporting your children. Believe me, you are very lucky to have it. Karen x

Thanks Ultranome, that's really very helpful Karen x

Thanks for the advice, all. I hadn't thought about emails, so thanks for that Lynne Karen x

Some of you will know that I deregistered J from mainstream primary in October 08 and we now home educate. At the time I made a verbal request for his school records but all I received was a bland computer printout with his personal details and attendance record, and his attainment levels for Y4 and projections for Y5. I'm aware that legally I have a right to any documentation referring to him but is there a particular way of requesting them? I seem to remember that you have to specifically request SEN info, incident/accident reports etc, but is there anything else? And does anyone have a link to a model letter I can use to request them? I have also been refused his workbooks so have little awareness of where he's at academically or what subjects he's covered. I was told they had to be kept till the end of the year 'for assessment purposes', yet I haven't even had last year's either. What's the position on requesting these? Also, around the time he was deregistered, I made an application for statutory assessment which (needless to say) was turned down. I'm aware that the 'evidence' gathered was largely from people in education who have had little to do with J, and mainly from the Head and class teacher who failed him while he was there and had good reason to be less than honest about his provision. Although we've decided not to pursue the appeal as we don't actually believe he needs a statement, that may change in the future if we decide to return him to mainstream education and I'd like access to the documents submitted by school as evidence and which the panel have examined to reach their decision not to assess - I think this would be useful if we do pursue a statement in the future as I'd need to know what arguments were given in the past for not assessing, iykwim. Do I have any legal right to see the evidence that was submitted, and again how do I go about getting copies? Thanks in advance, wise ones Karen x

Definitely agree with a Home Ed section. When I was looking into it Sept/Oct I was quite surprised to find so little information on here. The existing pinned thread starts off about temporary home ed, with tutors provided by the LEA, then crosses over into elective HE and that could be confusing for people considering this option. I think we need to have specific sections for both of these as the legal positions, rights and responsibilities are different for each of them. It would also be useful to have one thread for posting links to support organisations, resources etc for Home Edders. Karen x

Thanks Neil, the Thirlaway menfolk have been hooting at that one all day Karen x

I have heard of some LEAs pointing families in the direction of support and/or resources, and some schools even give parents the workbooks their children have been using in class, but generally once you deregister you're on your own and you get nothing. Karen x

We have a variety of relaxation cds that J used to has played over the years at bedtime, quietly in the background to help him drop off. He has soft music and also rainforest sounds, woodland, beach etc. I also have a soft lava lamp and other lights/visuals that soften the mood. Mind you, these days he prefers Elbow at lights-out. I guess he's getting older. Karen x

Hi Bid, so sorry to hear about your mum and no wonder you're so worried. I can sympathise - this last year I've been my mum's main carer and it's taken a lot of time, effort and sympathetic support to help her realise that she wasn't able to manage any more in her council house. Over Christmas we helped her move into sheltered accommodation and although it was a wrench for her (she'd been in her council house for 52 years) she's happy and settled now and it was all worth it. I totally agree with what others have said about a care assessment. At this point you don't really know what you're dealing with in terms of your mum's health but it's very likely that she'd be able to have some support in her own home, so I'd definitely suggest you go for the assessment. In our case, the social worker was happy to talk with me and my sister first as long as she was satisfied that my mum was aware of it - as I'm sure you know they can't carry out an assessment or offer support unless the person themselves accepts it, so you'll need to make sure your mum wants help before applying. I don't want to advertise here, but the sheltered housing complex my mum has just moved to is run by in a way that brings the community into the building, rather than isolating the elderly as has been the way of things in the past. There's a large public area downstairs with a restaurant, shop and hairdresser, plus the usual day room facilities where they hold activities and entertainment etc. (I've been amazed at how much my mum has picked up emotionally since having the opportunity to mix with other people - the social side of things does make a big difference). The residents' area is separate. This is termed 'end of life housing' which sounds horrible but actually means that because there are professional carers on site 24 hours a day, as long as the resident's care needs don't require medical intervention and support their needs will be met for the rest of their life and they'll never need to move out - the care package increases with need. I know you're concerned that your mum may have serious health problems and I appreciate how worried you are, but if not (and perhaps even if you're right) she might benefit from a similar sheltered housing arrangement if you can find one in your area. If you want to know the name of the organisation so you can look into their provision and find something similar locally, let me know and I'll PM you. In the meantime, please make sure you take time out for yourself and look after your own needs too. After all, if you're not up to it you can't be there to support your mum, which is clearly what you're trying to do right now. I hope the test results are more favourable than you're expecting. Karen x

Me too, and I'm glad you've posted to voice my feelings as well. In fact, it's the main reason I hardly ever post here these days - I worry that I'll inadvertently upset someone with my opinion or experience and I don't have time to spent on painstakingly deciding on every word just in case someone takes offence. Very often I've seen someone posting, asking for help or advice, and I've known I could contribute but I've shied away, just in case. That's not a very comfortable feeling as it's not so long ago that I'd have felt free to do so, but not any more. This isn't the place I used to love, and it makes me sad that such a valuable and friendly resource has changed so much in such a short time Karen x

You might find this useful: http://www.dcsf.gov.uk/localauthorities/_d...20Education.pdf Karen x

Have a look at the Education Otherwise website for more information. Also Home Education Advisory Service (HEAS). It might help to join HE Special discussion forum - all the parents there home ed children with various special needs and are a great source of info. You'll find them all if you Google. I started home edding my son age 10 with AS, just before October half term and he's calmer and happier than he's been in ages. Sometimes the system just doesn't work for some children and HE is an option worth considering. If you look at Education Otherwise you'll get a list of local representatives. It's worth making contact with someone in your area, go to a few meet-ups and get to know other HE parents and how they do things. You'll get some good tips on educational resources you can use, and there are likely to be some more formal group lessons you can tap into as well. There's a lot more out there than people think Karen x

Actually, my interpretation was that Cat did just the same. She spoke of a solution that had worked for her son, which works for many, and is worth considering. I believe this forum is about sharing ideas and experiences and as far as I can see that's what Cat has done here. I didn't read her reply as 'banging a drum', just saying "This is what worked for my family, have you considered it in your case?" To be honest, I don't see that as any different to giving advice on (eg) planning, organisation and time-management for ASD children, where the usual line of approach is structure and visual timetables, recommended and successful for most but there are a few kids who completely freak with the perceived pressure of having to do things at a certain time and for a certain duration. When someone posts with a problem they're having difficulty with, it's usual for others to offer their own experiences for the OP to draw on, weigh up and make their own judgements as to whether they're worth trying. That's what support is about, I think. IMO, It's worth considering that school sometimes just doesn't work however hard you try and however much you work with the authorities. In cases like Jeanne's it's sensible to look at what changes at school might have triggered her son's behaviour but realistically you may never know. Many schools, possibly most of them, have such a lack of autism awareness that they wouldn't know the sort of things that might set off a change in behaviour, so they may see nothing to report to the parents or tackle themselves. You can't solve a problem if you don't know it exists so they'll continue if nobody is doing anything to fix them. I took my son out of school just before October half term and my only regret is that I didn't do it years ago. I've watched him suffer for five years in mainstream school, despite repeated attempts to work proactively with two schools who have neglected his needs and failed him dismally. He's also been denied a statutory assessment, despite a one day exclusion for violent behaviour and an inability to get through the day without lashing out at peers and teachers, and the Head strongly advising me to get him on medication. As parents we've spent that time spitting in the wind, working our backsides off to teach J social skills that the schools have undone with their lack of support. Although I totally agree that the system SHOULD work for ASD children I have had to accept that sometimes it doesn't, no matter how hard we try and how supportive the professionals involved might be. I could have kept my son in school and fought and fought for more support, but there was no guarantee that he'd get it and in the meantime he would have continued to suffer and I couldn't allow that to happen. His mental health and long-term future were at serious risk. Yet in the two months since he's been out of school he has been a changed child - happy, calm and relaxed, more cooperative, and willing and eager to work on his problems. No meltdowns, very little anger, motivated. I accept that this is just one family's perspective, but surely a forum such as this should welcome ALL perspectives that could bring positive outcomes to children with ASDs. I can personally see nothing wrong with promoting home education as a viable option when a child is miserable and failing at school. All angles are worth consideration and IMO Cat is perfectly right to bring it to Jeanne's attention as a legal and appropriate alternative that she may not have already considered. Karen x

Thinking of you love. Hope we can have a chat at the party tomorrow. K x

Delighted for you Marion. I've recently started home edding my 10 year old and wish I'd done it years ago. All that wasted time trying to bang a square peg into a round hole - he's happy and calm now for the first time in years and it's a joy to finally have my son back. I can't begin to describe the relief at not having interfering and incompetent education peeps mucking things up all the time and refusing to support him. I wish you every success in the world and I know you're doing the right thing for him. Well done. Karen x

Silicone earplugs and a social story have both helped J, but he still freaks when something unexpected assaults his ears. Being prepared is half the battle for him - he can cope better if he's calm enough to be prepared. Karen x

Thanks for your comments. I'm at their meeting tomorrow so will say it's not just me who finds it irritating! Karen x

We do the same as Sue, except I've extended it to six points so I could make a card game, where you have to take turns reading statements on a card with a volume level dictated by the die. Level 1 is silence, Level 6 is emergency shouting, others in between. It gives practice at using the various levels and helps recall them in normal conversation. Karen x

What does it make you feel when you see wrong spelling of Asperger's written in documents by people who should know better, eg SENCo, teachers, psychologists etc? I have minutes from the planning group of our local 'inclusive' summer scheme where it's spelled 'Aspergus' and it irritates the hell out of me. For me personally, it says that if someone can't be bothered to spell it how much effort will they make to learning how to work with it? Any other thoughts? Or am I just being pedantic? Karen x

J was deregistered just before half term and is emotionally very unstable as a result of what went on before. I'm not fully 'de- schooling' because obviously he needs routine and structure, so I'm having to be very careful about how much activity and interaction with others I give him at present - his ability to cope varies greatly day to day and I need to judge him cautiously. At present I'm giving him a lot of downtime but also giving him regular KS2 workbooks (a page at a time) to keep him in the habit of routine schoolwork. But I've noticed that his work is of a much poorer standard than it used to be. J was always a long way ahead of his peers at his previous school, quite gifted at Maths especially and being taught in the higher group of the year above, and achieving well. When marking the workbooks I'm finding that he's making lots of careless mistakes and getting rather simple calculations wrong. I don't know if this is a) because the emotional stress he's still clearly suffering from is affecting his thinking ability, his academic standard has dropped during his time at this school, or c) this is a normal initial response to home education. Or is it a combination of all three? And what can I do to help him get through this difficult time? I'd really like to hear what other Aspie home edders have experienced in the early days of teaching their children. Thanks for listening! Karen x

I would love to complain more, but it takes such a lot of time that I just don't have. The processes are very long and involved and you invariably have to spend ages writing up your version of events, followed by phone calls and meetings to determine what really happened. Nine times out of ten (as others here have found) you're not even believed so what's the point? I should have complained about J's last school but didn't have time because I had to learn to drive to get him to the new one and that impacted on my ME/CFS, and several other issues going on at the time. I should definitely be complaining about the school he's just left but J's in such a mess as a result of their negligence that I can barely leave him unaccompanied for a minute, let alone spend hours writing all the details of the cr*p they've subjected him to. We're also in the process of statement application, a complaint (yes!) about my mother's botched care arrangements, and trying to set up Home Ed and make contact with other families. I'm suppoesd to be on two local authority panels for parent input but will probably have to cancel that too. Any time spent on a complaint about the school is time I should be spending getting my son stabilised emotionally, and I can't afford not to do that. I personally think this has a lot to do with why so many people don't complain enough. It's a very long and drawn out process and extremely time-consuming. People are reluctant to take matters further because of the effort involved. But I do agree that if you don't then nothing will change. Things just have to be prioritised and often we're too busy sorting out the mess to complain about what caused it in the first place. Karen x