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Coming to terms with SS and possible problems...

(23 Posts)
januaryblues21 Sat 12-Jan-19 17:33:17

Ds is currently at home - definitely not a long term solution - he's extremely lonely and disengaged. He's 8 with recent autism diagnosis and profoundly gifted IQ. Very traumatic year in mainstream with regular explosions and exclusions and was pretty much ousted from school. He had 2 great years at MS school prior to that and he longs for those days where things were simple and he blended in.

Professionals have all said that it's too big an ask for a MS to take his EHCP on with his autism, academic needs, sensory and emotional needs and it may fail. He can't go to a placement that will fail again as I don't think he will still be with us in a few years. They've suggested the only autism school in our area which is for autism and LD.

I have 2 main worries -
1. His Perception of himself in education and his dreams are to go to the grammar school, university and become a scientist - academically he is more than capable and his brilliance is a massive part of his identity and gives him structure, focus and pleasure. This school however, offers only a few GCSEs to those that can manage it, no A levels etc. It focuses on life skills, nurturing and communication. All things he needs as well but ideally alongside the thing he finds easy and enjoys.

2.His peer relationships. Whilst he never really had friends in MS, it was well documented by school that he struggled immensely with other children with additional needs. His social interactions skills can’t cope without a sympathetic other person. He struggles hugely with others rigidity, intense interests, poor pragmatic skills etc. Everything he has in himself but can’t cope with in others. These interactions usually lead to arguments, meltdowns etc.

I’m worried his school experience will be better in terms of exclusions and more understanding but lacking in curriculum and peer interactions and we will shift from one set of problems to another set, but maybe that’s just what you do as it’s this or he stays at home doing nothing at all?

Marshmallow09er Sat 12-Jan-19 17:56:47

My experience is that SS is a far better environment for DS (10 - said he was still 9 on another thread, oops!) and as a result he's a lot happier.
He was extremely disengaged with learning in MS though.
The work isn't as challenging but they do differentiate.

I read somewhere recently (I think it was Starlight McKenzie on twitter) - 'I'd rather fix maths at 18 than mental health'. I very much agree with this.

In terms of friends, DS rubs along with his classmates and there are some he enjoys spending time with at school, but I have made a big effort for him to keep seeing his old MS friends out of school whenever possible because he gets a lot out of those friendships (as do his friends).
The school are excellent at behaviour management and deescalation and actually DS is learning a lot about himself by seeing other children explode like he does sometimes, and he they calm etc.

It's been a posting experience for us so far.

Marshmallow09er Sat 12-Jan-19 17:58:02

Arg! Positive experience, and how they calm themselves

januaryblues21 Sat 12-Jan-19 19:41:29

Thanks marshmallow - I totally agree with the mental health statement. My worry with ds is that his mental health will suffer horrifically if it isn't academically challenged - we've seen that already. Having to reframe his future education to a few GCSEs and life skills will break his heart. He's too young to see the benefit of all the therapeutic side of a SS (and he hates all that, it's so painful for him) but school for him is learning and he loves loves loves the learning side.

He doesn't have any friends at all now. No one wants anything to do with him so it's just me and his dad who he spends time with. I'm so worried for him that he'll be just as lonely in a school full of people that he struggles with and can't make friends with (even though they are most likely similar to him!).

Fundamentally, I believe all people have a place in mainstream society and should be together as that's how understanding and tolerance is bred, right from childhood. I'm so saddened that that doesn't happen. I know there will be no way back for him as that gap will widen and he won't have any mainstream experiences to help him learn what life will be like after the school years. I really believed that mainstream school was the right place for him. Now, I don't think either is right for him. I feel so guilty for even bringing him into this world as he has had such a shit time and faces a lifetime of loneliness and not being able to fulfil his potential.

OneInEight Sun 13-Jan-19 09:29:18

ds1 has a very similar profile. We changed to specialist provision for him from year 6 onwards after he was permanently excluded from a mainstream primary. Like above posters we felt that he could catch up on academics later on if need be but if his mental health was destroyed then this is much harder to regain.

In a way we were lucky because we had a trial period at a primary EBD school when he was excluded and we could see almost immediately how much happier he was in that provision than he had ever been in mainstream. This made the decision to go for a special school much easier. Like you we worried about academics but actually he has done OK in this respect - he has two GCSES already and (hopefully) will do more in the Summer. He wants to try a mainstream sixth form and although we have some anxiety about it will give it a go. For us the special school route has meant he has a good chance of mainstream life as an adult.

You do have to be very careful in your choice of specialist provision though as they vary a lot in their attitudes and provision ( we have another ds and specialist provision did not work for him because they were not flexible enough to cope with his demand avoidance and anxiety). Sadly, ds2's future looks bleak because we have never been able to find the support that he needs either educationally or via mental health services. He is equally as bright as his db (ds1 did actually pass the 11 plus) but I don't think will end up with any GCSE's because he is very demand avoidant about writing anything down (he is educated by home tutors at the moment). So with our experience focus on getting the mental health support right and the academics will follow.

P.S. ds1 has also always loved learning. A bittersweet memory of the day he was permanently excluded was a teacher talking him down from meltdown by starting to talk about complex mathematics (logarithims I think it was). Far better than the deputy who even after the decision to permanently exclude had been made decided it was a good idea to give him the chat about appropriate choices. Still missing that actually there was very little choice about his behaviour once meltdown had been triggered.

Claw001 Sun 13-Jan-19 11:27:36

Look at independent specialist schools. There are specialist schools for ‘high functioning’ autism etc.

januaryblues21 Sun 13-Jan-19 12:21:34

This school is really our only other option. It's an autism school for children who can't cope with mainstream environment rather than learning needs but they do have a lot of children with LD even though that isn't their cohort on paper. They say children 'usually do a handful of GCSEs if they are able'

It's not the doing GCSEs exactly that I'm concerned about (he could do them online from home if necessary whenever) it's that I think coming out of mainstream will solve a lot of problems that will help his mental health but also going into SS will also create a lot more if that makes sense.

He really REALLY struggles with interaction with others with special needs. MS school said that it just doesn't work. He needs to be with tolerant, equally bright NT children to stand any chance of friendship (although know that MS school environment is impossible for him now). We might strike lucky but his lack of friendship and loneliness is the main source of mental health decline - that and isolation at school. That could carry on in a SS and he carries on with mental health problems AND doesn't get to do the learning he loves in a school that doesn't focus on that side.

Despite all this in MS he still did tons of work, that was never a problem. He would do in 5-10 mins what others took an hour. His meltdowns would come from lots of reasons and then he'd be excluded. It was astounding how much learning and work he produced throughout a genuinely crap time!

Sowhatifisaycunt Sun 13-Jan-19 13:03:13

I’m not an expert in this field but I do come across children with additional needs in my professional life. In my experience, EBD school do an excellent job and creating the kind of environment in which children with sensory and social/emotional needs can thrive. It may not be the most academically challenging environment for your DS but it may be a place that meets his other needs and can prepare him for reintegration back into MS, perhaps with some additional tutoring? Otherwise, I would echo what a pp has said in respect of looking for a sowcialistnprivate provision (and getting legal advice to get the setting names on EHCP).

OneInEight Sun 13-Jan-19 13:32:13

If you want to say roughly what area you are in I am sure posters might be able to suggest some independent specialist schools in your area that might be worth investigating. Your LEA is unlikely to give you this information willingly as they cost ££££. Social issues may be less than you think because of much smaller class sizes (ds1's biggest is 6 pupils), higher numbers of teachers and greater experience in SEN than in mainstream (usually). It was a very steep learning curve for ds1's and ds2's mainstream school when they started having problems and they just couldn't adapt fast enough.

Bakedfishpie Sun 13-Jan-19 13:45:20

Somewhat surprised that the professionals are recommending an ASD/LD school as an only option for a child with this profile, unless it is an Independent specialist placement. I hope they have fully exhausted the full time ASD trained 1:1 support option in an other mainstream first.

Have you visited the school OP? Some ASD LD schools actually have a HFA group/class and this can be beneficial in these circumstances. Also, at 8, it does not necessarily mean he will stay in SS for all his school life. I would visit and ask them if they have experience of pupils returning to MS at perhaps secondary level and also ask them how they could provide him academically, as well as socially/emotionally in the meantime.

Also ask if they do social/interaction type intervention work as an alternative to going on formally on roll. This can be a very useful way of testing the waters in terms of seeing if it’s a good ‘fit’ socially and receiving social/interaction support at the same time. Normally this is in liaison with the child’s actual MS school, but if he is no longer on a school roll, but has an EHCP and the LA is currently involved with him, then it can be arranged directly.

Twice exceptional children (gifted and disabled) can often benefit enormously from home education, even for just a couple of years, as it gives them space to follow different approaches to learning, to mature and to receive social/emotional development learning separately and then being able to take part social interaction in small bite size chunks to develop those skills and relationships. But this does require a big commitment from parents, especially as this means explicitly teaching our children social thinking/emotional skills that we learnt instinctively.

If he is disengaged at the moment, have you thought about doing some interactive online learning. Not for all his learning, but perhaps pick one or two subjects, where he will be part of a small group learning together online for an hour or so a week. It’s a good way for bright ASD children as they can be in an accelared/mixed age class and still feel part of a group, but have the parent close to assist/redirect if problems arise. Some of the online schools such as myonlineschooling.co.uk allow you to take single subjects and may record the lessons, so he should be able to catch up with lessons missed if you are concerned about starting in the second term. This is a double benefit of getting learning and social interaction, in a safe environment, simultaneously.

In terms of him being isolated, have you tried seeking out others via the local home ed facebook groups, by posting and seeing if anyone has a child with any shared interests who may be interested in 1:1 meet ups. If you have a LA home Ed or LA ASD Adviser, you could also ask them to put you in touch with any other families of a similar profile within your county.

I think it is far too early for you to feel he won’t fit back in anywhere. If this is a recent diagnosis, you are probably still grieving for the child you thought you had. You need to get support from families who are both going through this and have come out the other side of this. This means getting involved in both the SEN and the HE community and reaching out. This age is often the worst in boys in terms of learning to self regulate, etc, regardless of if they are NT or have additional needs, but it can and does get better if they receive the right interventions early. Sometimes, sadly, we only hear the negative stories on mumsnet!.

Raising a gifted child or a child with SEN, can be challenging, rewarding and frustrating. Having a child that is both takes exceptional parenting and a supportive network around the family. Have you heard of the bright and quirky summit. They record the speakers and you can listen to the recordings for free for the first 24hrs. it may give you some helpful pointers. brightandquirky.com/summitreg/

januaryblues21 Sun 13-Jan-19 14:11:34

Thank you for all the comments, really helpful and lots of good points to consider.

He is being home education currently, has been for a year and likely to be for the next year at least. It's ok. But not the ideal we thought. He's extremely lonely. He loved school - loved the interaction, the activities, the teamwork, the different adults and the learning most of all. He just couldn't get why they environment made him feel and react in certain (explosive) ways and the school couldn't get ahead of the game to help him (I actually blame the outside agencies for that - it's taken over a year to get relevant people involved so no one knew what they were dealing with). At home he's so sad and isolated. He does many activities during the week but if they are mainstream out of school type groups, he doesn't fit in (although stills enjoys it) but has no friends/interaction. If they are home ed groups, they are so under used that there may only be 1 or 2 other people there and usually no one he has anything in common with. I know there are many home ed children here but they must be busy doing their own things because very few turn up to anything organised or social! I think a lot have SEN (specialist provision here is very poor) and they struggle with organised activities. The online classes is a really good idea actually. I'll look into that - thank you!

We haven't visited the school yet. We will as soon as we can but it's only just been suggested to us. They think mainstream with support could end in failure therefore it's too risky (I do agree, it's jut such a shame as I do believe that aside from his explosive tendencies, he would fit better there. There are a few independent specialist schools around and we will look at them but none so far feel right. There's a bit outdorsey/agricultural focus to them which just doesn't suit ds.

We are in shock, definitely. Both of us have worked in special schools and know the bubble they can create and given that ds has very little to do with the wider world otherwise, I can just see him becoming so far removed from mainstream society that it'll be increasingly difficult to come back from.

He has these internal constructs about what he believes of himself and his future to be and this is going to shatter that, even if it is the right thing to do and he may well be better for it in the future. I'm not sure I'm explaining myself very well though!!

Claw001 Sun 13-Jan-19 15:40:17

Have you looked at independent mainstream, with specialist support on site?

Whether specialist schools could suit your son, depends greatly on what they specialise in.

My son has a very high IQ, no ‘severe’ LD etc. we had to look at independent specialist schools, out of Borough (after 3 failed mainstream placements)

zzzzz Sun 13-Jan-19 15:54:14

I’m place marking for later as the house is full. We escaped a bad fit Ss nearly two years ago and I really wouldn’t. I’d go forest school and inter high/briteschool or tutors for academics.

januaryblues21 Sun 13-Jan-19 17:51:20

Independent mainstream wouldn't work even with SEN support. There are 2 schools locally and both are not very SEN friendly. We would be on pins expecting an exclusion every day. They just don't have the training, tolerance and understanding.

Also, we can't home ed indefinitely. Apart from it not being the right thing for ds, we can't have 1 of us out of work for much more than another year. We'll be in financial destitution / debt etc. We'd have to sell our house for various reasons. We have to think long term about pensions etc. It's just not feasible. We both work in frontline professional jobs and can't do this work at home (we both quite like work too. We've been taking career breaks each and it's not something either of us want long term).

It's just so horrible. I feel like the walls are closing in and there's no where to turn where I can see the light. I can just see the next 10 years are going to be full of sadness, loneliness and making do with what scraps we can find to pass as an education. I'm horrified this is what happens to children with Sen, absolutely horrified.

SaturdayNext Sun 13-Jan-19 18:00:35

Have you looked at independent specialist schools? Some of them are very good with academically able children.

januaryblues21 Sun 13-Jan-19 19:36:11

Saturdaynext - we are looking. There aren't really any round here with that focus. They are all mostly horticulture and horsey type places. Provision is very poor here.

Claw001 Sun 13-Jan-19 21:16:57

Any SS’s out of borough?

januaryblues21 Sun 13-Jan-19 21:42:31

Funnily enough, just been looking out of county and there isn't anything there either without travelling 2.5hrs. I live in a big county with very poor provision and it takes well over an hour to get to the county borders so not much choice at all. The few SS are for LD and/or autism and the few specialist independents are very horticultural / horsey types. There are 2 autism schools for mainstream cognitive levels being built in the next few years in our county which I got excited about but again they both follow an outdoors / growing veg / looking after animals approach....ds hates that sort of stuff! Why can't these places be focussed on maths and building rockets grin

If the school they have suggested isn't suitable (and I have my doubts), we will have to think about moving which is awful. Have to leave family, our home and jobs. We can't afford to move and it's so risky as there's nothing to say he would get in or be successful in a more academically focussed SS.

Or we just give up and he stays at home miserable and alone and uneducated.

I'm actually ashamed of how this country treats children with SEN.

lorisparkle Sun 13-Jan-19 21:58:45

Could you look at continuing home Ed and then looking at the grammar school? We went to look round our local all boys grammar and they seemed quite used to students with ASD. Ds1 found mainstream primary very tricky especially as he got older but is loving secondary. He likes the structure and routine and the independence. There is not the social challenges of being with the same 30 children day in day out and the same teacher. He has not got all the challenges you have described that your ds has but it could be worth considering.

januaryblues21 Sun 13-Jan-19 22:24:07

Lorisparkle - it's a possibility. I guess we don't know the future and in 4 years he may be much less explosive and he may manage. If he continues to be explosive or it gets worse he definitely won't manage and I feel very sad for him as he would thrive academically and there may actually be some like minded peers.

I do worry about how little social interaction home ed is offering him and how that will translate to secondary. He's years behind and years lacking in shared play, play dates, parties and such. He's just always been alone and never experienced any of them so how can he ever be at the level of others his age. He's such a lovely, funny social little boy who could learn to be such a good friend if someone would let him.

Claw001 Sun 13-Jan-19 22:31:10

I think I realised at our 4th school placement! No school is perfect! smile

My son has attended 2 mainstreams. 1 indi, with specialist on site. He now attends indi SS, which is by no means perfect! He travels an hour out of Borough.

For the first time, he has a couple of ‘friends’, he gets on well with older children, They placed my then year 8 son, in a year 10/11 class due to his abilities. They don’t push him enough academically. But this is the happiest he has ever been in a school!

If this placement fails, our only other options will be residential or home ed. Neither of which, my son wants.

I suppose it’s about listening to what your son wants and making the best of the options available to you.

It’s bloody hard flowers

Lovemusic33 Mon 14-Jan-19 16:01:23

january you sound like you live in my county (or somewhere similar), my eldest dd is similar to you ds, very high IQ and has dreams of going to uni. We stuck with mainstream and chose a smaller more understanding school, it hasn’t been easy though, she gets bullied a lot but she does have a small group of friends who are similar to her (the school has quite a few ASD students due to it being smaller and friendlier), she’s now 15 and in her first GCSE year and I’m please we have stuck with it, she’s now predicted 9’s in her GCSE’s and will hopefully go on to do A level.

My other daughter is in a SN school out of county as no ss would take her in my county due to her being too academic, she will only sit 3 GCSE’s but her ASD is so severe that life skills will be more important to her.

I think if I were you I would push hard for a care plan to be in place and support put in place in mainstream, you may be able to push for a place in a private school but this is tricky.

lorisparkle Mon 14-Jan-19 20:32:19

I was always worried about my son socially but have now realised that he really is not that bothered about friends. He is lucky that he has been befriended by another boy at school who sticks up for him, invites him places and reminds him about how he should behave but ds1 kind of tolerates this friendship and we have to regularly remind ds1 that he should reciprocate. He would be much happier in the digital world, adult world or lego world and certainly not in a group with his peers. My friend has a son who is now a young adult and she said the same. She was constantly worrying about play dates and socialising but he is just happy in his own company.

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