Roll call for parents/carers to SN teens and young adults. Come and say hello

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Hello

This is a surprisingly quiet corner of MN isn’t it? I wonder if that’s because we are all so skilled in hiding what’s going on and not talking about the good, the bad and the ugly?

I feel quite sad that so many posts are left unanswered or just a few supportive replies. where are we all? are we all off trying to deal with life and then too exhausted to do anything further than read?

Come and say hello, maybe we could have our own nobdies clique, 1 thread just for us. (I’ve been on MN for years, Nobdies was a nobody replies to my thread post years ago, it run for many, many threads and started with just a hello)

DD13 is diagnosed and medicated for ADHD & ODD. Today the consultant said she wants to refer for an ASD assessment so we continue the long road of doing our best.

to you all

This thread is good timing for me. DS (13yrs old) had a diagnosis of ASD and ADHD at 6years old and has had a statement/ECHP since 7 years old.

Today we got an email asking for a meeting tomorrow morning about an incident that happened on Tuesday where DS was apparently chasing a boy who fell and ended up hurt. They will give me the full details at the meeting tomorrow but I think he will be given an external exclusion as we were told the last time that if something happened again they would exclude him . This is so disappointing as he had been doing so well untill a few weeks ago,

His behaviour in primary school was very very difficult to deal with and we just scraped by without him being excluded, mostly, I think because the school was one that didn't give up on him. Also by year 5/6 he had improved considerably, though still not perfect obviously

His behaviour continued to improve and he is now in mainstream school. Year 7 was like a heavenly dream. Despite it being a large, scruffy state school in a city with a very mixed intake, he settled very quickly, seemed to have a few friends and he had no flare ups at all until a couple in PE the very end of the year. His teachers all seemed to be dealing well with him and all said he was very bright etc.

This year (year 8), PE continues to be a problem and he has not done PE for most of this year. Instead he spends the time with an adult mentor, doing emotional skills work and some drums/keyboard stuff (as reward for engaging in the emotional/social work). He also had a slight wobble at the beginning of the year.- not agression (except for one incident) but some mild classroom disruption in most classes.

However at the parents evening in January , all the teachers said that after a rocky week or so at the beginning of the year he had settled brilliantly again and was working very well. He has had several merit points since then and no behaviour points. The same thing was said at the SEN review meeting we had two weeks ago. Now this !

It is so exhausting. As DH and I often say, it is the hope that kills you. I really hoped in year 7 that we had seen the last of his aggrssive outbursts at school. Whilst there are many fewer of them (think 3-4 a year compared to 3-4 a week in primary), he is obiously much bigger and older and the portential for hurting someone seriously is much more.

At home or with family etc he doesn't show any agression to towards us at all. He does get upset about stuff obviously but he usually freezes or self-harms (mildly as in banging his hand on his head etc if he is really upset). He always seems to recover quite quickly as well and his resilience at home is really much much better. He never lashes out and hasn't done so since he was about 5 years old. It is ALWAYS in school

I know it probaby sounds sounds mild compared to what others have tp deal with with but I find I am worrying about him more and more as he gets older.

Hi bumbling. My bet is that your son's deteriorating behaviour is stress-related. Doesn't sound as though the school is meeting his needs properly and they seem to be convincing themselves that everything is ok, even though there is evidence that it's not.

He shouldn't be missing PE for a start - it's a NC requirement, so provision should be made for him to access it. I'd want to know why that isn't happening.

It doesn't sound mild at all - it sounds very worrying for you and distressing for him. I wonder if he's starting to worry about GCSE choices coming up, or there are other everyday issues that are upsetting him? You won't be able to resolve anything unless you can establish the reasons for the way he is presenting, and a big part of that is for school to be honest with you about what they're seeing and how he presents during the day.

It sounds very challenging for all of you .

It sounds stressful, partly because it is in school - where you have so little control.
How much insight does your son have into what’s upsetting him? Is there anything about the situation that can be changed? Is someone provoking him?

My DD has Tourette’s and at times can seem mild ASD, when she was younger she became overwhelmed if there was too many stimuli in her environment. She didn’t lash out, but did freeze. Her Dr actually put her on Propanalol for anxiety and that helped too.

Is he on any meds for the ADHD? Both mine have had symptoms worsen as they moved into adolescence and my DD started meds for ADHD when she was 14.

My DS with Tourette’s can’t cope with most team sports - which is a shame because he’s good at football. He gets easily riled. He needs to do some sport though because he’s so stressed these days (and so am I!). I’ve just signed him up for indoor climbing which he really enjoyed.

Hope some of that makes any sense. It may not be relevant, just my experience

Thanks for replying.

DH and I have had a chance to talk to DS this evening. He did get a bit upset but he used breathing exercises to calm down which we were really happy about (and told him so)

His version of the incident is that he had been with his friends at break , and one of them jokingly said a boy called X had his bag, and asked DS to get it. X is a friend of DS's . DS ran over, tripped, and put his hands out on X. X then went down, and there was blood. DS asked him if he was OK and tried to help him up. Then it was the end of break and he had to go to the school office to write his verison of the events.

He got very upset when we explained that X might be badly hurt as he said X was his friend and he hadn't meant to hurt him. Also he says that the 'friend' who asked him to get the bag is also a friend of X. then again he would probably not be aware of anything that might be going on between his friend and X

The school have looked at CCTV and say that his version doesn't tally with what is on there. That doesn't surpise me as he rarely remembers or completely understands what has happened during one of these incidents . We we shall see what they say tomorrow

We did talk with DS about school a bit and it seems that he is particularly unhappy in one class here they have a new teacher in to cover. He says that the class is hard to work in because lots of the children mess around and really bug him. Also a new child has joined his class/group who he says is by far the worst .

In fact the teacher for this class did set some homework last week that mentioned the bad behaviour in class and that homework was being set to catch up with what she had not been able to get done with them in class. There was also an incident in this class a couple of weeks ago when (I think the same) boys were hassling him at the begining of the lesson and it led to a shoving/scuffle incident as well.

Maybe the issue with this class is stressing him and he not as able to cope with stuff. It is so hard to help him as he just never says anything about any incident at school until the teachers contact us. He always says everything is fine, though I imagine that is par for the course with ADSD and ADHD. Maybe we will need to look into medication for ADHD as he isn't on anything at the moment

Thanks for the suggestion about climbing, we may try that. He does kickboxing at the moment but he is getting a bored of it I think .

Do you have a single teacher as a point of contact? Maybe a guidance teacher or form teacher or a learning support teacher?
Can you meet face to face and discuss things? Your son is not being malicious, but his grasp on life is different to others, and the school need to manage that, because otherwise he gets stressed and that doesn’t go well.

I think you need to get the school to see your son as a child trying to overcome difficulties - rather than a different child. Get them on side and they will help.

With my son - moving his desk has helped - I think he feels penned in in some classes. They also operate a traffic light system - he can have a break any time he’s feeling stressed.

ADHD meds have made a difference to my daughter. She’s bright, but couldn’t structure things in her head (frontal lobe of brain), also she is very impulsive. She was on Ritalin and is now on Atomoxetine. It’s helped her realise her potential and she’s now at Uni.

Bit scrambled - had wine - been a long day!

That should say difficult child, rather than different child. Sorry.
Mine are all very different! Whether or not they have additional needs!

Anyone mind if I join in? I've not much to offer at the moment. My Son, 16 has just been diagnosed as ASD, ADHD and an anxiety disorder. He doesn't know yet. I have taken the decision to delay further assessments and not to tell him until after he sits his gcses.
I thought I would be relieved at a diagnosis but instead it has completely devastated me. And whilst I know he is still the same boy im incredibly sad.
If aanyone has any practical help with sitting gcses Could you let me know, Ive been told that it is far too late for the exam board to consider any Concessions.

Some quotes from JCQ's access arrangements that might help:

file:///C:/Users/User/Downloads/AA%20regs%202017-2018.pdf

‡Late applications on account of a temporary injury or impairment, or a diagnosis of a disability or manifestation of an impairment relating to an existing disability arising after the published deadline are permissible. Centres must process applications as per paragraph 8.3, page 89 using Access arrangements online where required.

4.1.2 Communication and Interaction Needs†
E.g. Autistic Spectrum Disorder (ASD), Speech, Language and Communication Needs (SLCN)
Candidates with communication and interaction difficulties may require for example:
• supervised rest breaks
• extra time
• a computer reader or a reader
• read aloud or an examination reading pen
• modified language papers
• a word processor
• a scribe.

Look at page 26 & page 40 (bottom of the page)

You need the diagnosis; and standardised scores below 85; proof of usual way of working - this can be homework, his use of technology, how if read to, his results improve; the use of breaks to help concentration; separate space to reduce stress; or even how things haven't worked in school - when he doesn't finish exams/work. The school will have to do quite a lot of paperwork but it is all possible.

Good luck.

Can I squeeze onto the end of the bench, please?

My 20-year-old DD2 is on the autism spectrum. We're stuck at home together the whole damn time and we seem to bring out the worst in one another. After a series of increasingly acrimonious confrontations since the beginning of the year, I decided six weeks ago - for the sake of my own sanity - simply to stop interacting with her. So I haven't spoken to her, or acknowledged her efforts at conversation, or opened my Mother's Day present, etc, etc...

I know I'm behaving horribly, but I feel so much better for doing this - less stressed, less pressurised, less judged by other people when we're out in public.

I'm also struggling with the realisation that my closest friend of 40-odd years really dislikes DD2. I had an "I don't want to jeopardise our friendship but..." letter from her last month, basically telling me that I've mollycoddled DD2 for far too long and should get her into supported accommodation, which has bloody-nigh broken my heart. I think if anything I feel completely and utterly betrayed. So I haven't spoken to my best friend for six weeks either. (There's a bit of a pattern emerging here, isn't there?)

Sorry to moan away here. I don't have anybody I can properly discuss this with in real life and I sometimes feel as though I'm drowning. If anybody's experienced similar circumstances, I'd be so grateful for advice on how to pull myself out of the doldrums.

Thanks for reading.

Hi, can I hover around too? DS is only ten, but I often feel as if I'm dealing with a teenager ...

And I worry about how the way we parent him now (we manage OK, but often get it wrong of course) might echo down the years, iyswim.

He has dyspraxia (diagnosed a couple of years ago) and ADHD (diagnosed within the last fortnight, to absolutely nobody's surprise).

s all round to anyone who needs one. FoulMouthed, how are things going?

Hi, 64BooLane - thanks for replying. I'm still running in silent mode, but had an e-mail from my best friend on Monday asking if everything was OK here as she hadn't heard from me in a while, and when I hadn't replied after 48 hours, she dropped DH a quick line this lunchtime to check if we'd had some kind of crisis here. I know I'll have to speak to her soon (by phone - she lives abroad) and try and patch things up, but right this moment if she called I think I'd scream, "I feel betrayed to the very marrow of my bones, and why do you always have to be so damned mean about DD2?"

It's not always, to be fair to her, but I can think of a lot of petty shots she's made over the years which I've previously glossed over and I think this one was the final straw. She also said, ih her letter, that it was time for DD2 to face reality and accept she's never going to be able to become a butcher. This is the same person whose teacher suggested to her mother that, as she was "only" an immigrant in their country, she might one day become a hairdresser; she became a highly-respected, very senior grade civil servant and is still recognised in public and greeted by people she helped over the course of her 40-year career. Surely my DD2 can look for work behind the counter in a butcher's shop somewhere, without my best friend shooting her down?

...But anyway, can I help you with your DS? Our DD1 was diagnosed with dyspraxia around the age of 8 or 9, and finally also got an ADHD diagnosis at 21 - before that, although all the signs were there, it was written off by her schools as immature behaviour (she was the youngest in her year) or as disorganisation linked to poor executive function which was also a symptom of dyspraxia. ...Oh yes, and to "poor parenting" as DH and I were Those Parents and always fought her corner!

She's now in her mid-20s, a university graduate, and holds down a job which requires a lot of precise measuring and close monitoring of substances. If by chance your DS's difficulties or behavioural quirks are similar to my DD1's at the same age, I'd be very happy to share any coping strategies we devised that actually worked.

Meanwhile, try not to worry about how your parenting style and choices might echo down the years: you clearly care deeply, you've obviously kept up the pressure to get your DS his diagnoses, and the very fact you've joined us on the bench here shows you're committed to giving/getting him tailored support to enable him to achieve all that he's capable of. Don't fret about the distant future.

My daughter is not quite a teen but as she approaches 12 she's starting to have teenage types of needs. I wish I had a nice clear diagnosis of something but we are still in the roudabout of tests and assessments and "possibles" and OMG the "borderline". If only I had the time and less pain in my hands I would love to keep a blog called "Raising a borderline child" as she has been denied help and support for so long for being just not quite this but not quite that.

Needs wise, she has social communication issues, she does eventually warm to new people but for the first several months she will look through them as if they aren't there. We have finally moved on from being able to spend a 60 minute appointment with her eyes fixed and unmoving on a single spot she liked the look of when she came in, but she's still not exactly chatty! She is going to lose the club that she's been to most of her life so far soon as she' has got too old, but I cannot persuade her to try a new club for older children.

She has difficulty with sensory processing and I think they were going to diagnose Sensory Processing Disorder, then decided to go with Developmental Coordination Disorder (dyspraxia) and also did a learning disability screening where she was borderline yet again but now "learning difficulty" has shown up on her paediatric report. They put her social difficulties down to the learning difficulty so now ASD assessment is off the table. She's got a mild hearing loss which fluctuates into moderate but (guess what) she's borderline for needing hearing aids, and children without hearing aids are not eligible for any help. And because she's so "borderline" it's even more common for people to say all their chidlren are just like that, it's normal, that's how it is, they are all different... you know the ones. Yet behind closed doors all her daily routines still require a reference card to help her plan, and she cannot wash her own hair or anything like that. Goodness knows how she can be expected to go off to high school and turn up in the right classrooms at the right times, and "It's a big transition for them all" is not much of a consolation to me with a kid who still frequently makes a wrong turn coming back from a shop we have been to hundreds of times, and was lost for half an hour in a shop because "Wait for me at the top of the escalator" (she was already at the bottom of said escalator) was too complex an instruction! She is just so very... oblivious is about the right word.

We would love to find her a place in some kind of SN youth club where they have fun but it's also quieter, has more staff, more support and lots of repetition to cover simple things. I'd like her to get access to the "daily living" curriculum that is covered in the special schools so she can start getting a more age-appropriate understanding of money, time, the world. And hopefully become a bit less vulnerable - not be susceptible to dares or giving away her money to "friends".

LOL sorry, that rambled. I am preparing for her to go to the dentist this afternoon, so my mind is all over the place.

Hi Claennister - my goodness, the challenges of living life on the "borderlines"! It must be so frustrating for you and your DD, never to have her difficulties categorised as severe enough to require the extra support that would actually make so much difference.

What are your plans for secondary/high school? Have you already checked out the pastoral support and/or chatted to the inclusions officer/SENCo at your DD's potential next school? Just because she doesn't yet have a formal diagnosis, that shouldn't prevent them from putting extra support in place for her - and better for them to start on it now than to leave it until the tail-end of the autumn term, say, after she's transferred there and begun having difficulties finding her classrooms or hearing and processing instructions.

Alternatively, if the local special school's curriculum would actually be of more long-term benefit to your DD - as you mentioned their "daily living" lessons would be so useful - have you looked into the possibility of her attending there instead (or perhaps transferring there in a year or two from the secondary school you've chosen, if that really does overwhelm her)? Do you think she might thrive in a special school environment, especially if she perceived herself as one of the most able students there?

Best of luck with getting a diagnosis - no matter what diagnosis initially, it'll give you and your DD a foot in the door for additional support and then her other needs should start being recognised too.

Do pop back and let us know how things are working out.

Hello this thread is a slow burner, but no surprises as we are all knackered/filling in forms/ caring/working/crying/picking ourselves up/marching on! It is a time consuming life.

I got out and done the weekly shop in a supermarket today and shaved my legs. It’s a good day.

I am here tonight if anyone wants to post their day x

I hope my post was not too trite. I am finding it very difficult to switch off from the constant internal conversation and quest for answers and support.

I miss just chewing the fat.

HI everyone. This thread is a slow burner as pp said but it's good to know it's here. I meant to come back to it sooner, but life keeps getting in the way! DD(18), diagnosed with Aspergers about 18 months ago. Pretty high functioning but also with severe Social Anxiety (and other Anxieties too!). She was in tears last night - she is so very lonely. Her life consists of work (very demanding but minimum wage/low educational level type job) and home. Very little by way of social life and she has always struggled to make and retain friends. Hates going to pubs and clubs, although has on rare occasions done so when invited. But mostly is not invited, and if she is, gets in a right state about it. It's so sad seeing my lovely girl alone and fearful that she always will be. I'm running out of suggestions for her - anything I suggest she could join gets rejected as either "lame", "full of old people" or too scary!

Hope everyone else is doing okay at the moment.

blimppy I read so many positives in your post. I am in a similar situation and the isolation and loneliness in my teen is by far the thing that worries me beyond the multiple mental health issues.

I have suggested so many things as you have. I am wondering if the barrier to external connection is so great that it may never happen.

I feel that all people that have a vocation or interest that is satisfying to the core lead the happiest lives. My teen does not have one. My teen flits from intense brief obsessions that bring discontent and feelings of inadequacy.

I understand why you feel so sad watching and being unable to fix it. You sound lovely and supportive.

Work went a bit insane for a while but I'm back! The OT offered to come with me to meet with the school even though the diagnosis isn't fixed in stone, so I've been into the high school and set up a few things. They are going to give her an iPad for all her school work and see how that goes. I started teaching her to use Dragon speech recognition software (the Google version wasn't as good as we needed) but because she's not a fabulous reader she hasn't been able to run the training part, and her speech isn't super clear so the outcomes are improving quite slowly, but happening. The school will be asked to give her extra time for any assessment as she will qualify for extra time in exams - they're thinking ahead very well, and the test run by the OT is enough evidence on its own for extra time even without a global diagnostic label. They are happy for us to do homework in whatever way it suits, she can do it on the computer or if it's one with boxes to fill in then it's OK for me to scribe it for her. They are also happy to have it on a voice recording so we can get that burst of thought before it vanishes - she can't think something then retain that thought through the process of trying to write it, the spelling, ordering and physical effort blows it out of her head, and she will reduce the thought process if she can make it into shorter words and less writing! If homework is too hard then come in and they will adjust it. The school actually does have a SEN class, which I didn't know. She isn't a good fit for them academically, but those kids will be floating about the place for her to pick up friendships with, and if they have sessions which would really suit her then she can go in with those in addition to those for her own class. As life gets more into shades of grey and the need to make decisions without clear right answers that she can just learn, she will need a lot of help to make suitable judgements about trust. I forgot to tell them that she'll likely have more trouble with the simple things than complex ones, as teacher realise they are explaining something difficult when it's a multi-layered new concept. She's more likely to struggle with things like "put your homework in the blue tray and your text book in the red one" because to the teachers and to her peers this wasn't hard. And they confirmed they have placed her in the class with her friend, which is a huge relief as making friends is a bit uphill for her. We also found the "Easy Dressing" range of school uniform in M&S so she has shirts with hidden Velcro behind the buttons. I feel much more prepared now. It's odd to float back and forth between feeling like I'm making a lot of fuss about nothing to feeling I'm making no fuss and letting it all pass me by. But I think that's her, really, 90% of the time she seems totally average and middle of her group, but the 10% is very in-your-face not average. I was floored when the OT did a test where she had to use her left leg to hop to the right and she could barely stand up.

Why I didn't mention in 7 years of primary that it's hopeless giving them differentiated classwork for sets then sending mixed ability homework I can't fathom, but I have struggled through hours of homework with the poor kid rather than tell them it's too hard. I'm going for a clean slate with secondary. I guess I though I could catch her up somehow, and that by making things simpler I'd widen her gaps, but it doesn't work like that.

Overally it looks more positive.

Just discovered your update on here, Claennister - it's great to see how well things are working out in your DD's transition to secondary, and that you've managed to get so much support in place for her already. Well done!

Things have improved a bit at my end, too - I had an apology from my best friend and we made up, and she's been much more careful (and more supportive) in what she says about DD2.

...Aaaaand ^^ DD2 is about to apply for a trainee's position in a butcher's shop! DH rang the butcher up and asked him outright if he'd consider an application from somebody on the autism spectrum and he was very receptive and urged her to send her CV in, so we've just dusted it off and started tweaking it to present her ASD traits - punctuality, strict observance of rules, excellent focus on simple, repetitive tasks - to best advantage.

(I so, so, sooooooooo badly want her to get this job, just so that I can casually tell my best friend the news and watch her eat crow pie! I am a mean-spirited person. )

Checking in here..hadn't seen this post before.
I have DS2 who unbelievably has just turned 21. Autism, moderate learning disabilities, dyspraxia, OCD. He has a part time job in Asda, who have been fabulous with him. He is quite impaired and will never live independently.

I also have DD1 who has Ehlers Danlos Syndrome, ADHD, Autistic traits, and is frankly bonkers Despite all of this she is now a junior doctor! A very lively one at that!

I’m a single mum to one 18yr old daughter who is in a complete pickle.

She has been labelled many things with no absolute diagnosis. She’s been told she has MD, possibly AS and/or ASD, psychosis, schizophrenia, MPD, mild dyslexia, dyspraxia, bad anxiety, panic attacks and OCD. She was also recently diagnosed as PCOS and just hates her whole body because of that.

Since her teens she’s had several breakdowns without hospital stays (as there’s hardly anywhere to go where we live!). It’s completely ruined her education (missed nearly all GCSEs due to mental health and an extremely bad school) and any hope of a decent future.

She’s pretty much a hermit. For years she’s stayed in her room on her computer or phone, sleeping gaming or comfort eating. She has no friends nearby, only online. She lies constantly about doing anything hygiene related (doesn’t wash or do teeth for months at a time) and refuses to do anything claiming “what’s the point?”. She also has really bad dermatitis on her scalp and doesn’t wash it for months too.

I feel really bad and guilty to say it, but, I’m embarrassed to go out with her because so many people look and are shocked. Doesn’t help that she hates me, blames me for all of her problems and finds everything I say insulting.

I’ve been struggling for many years to get decent help and support to cope with her, but instead have been met with social services that aren’t needed and make me feel guilty for having my own problems, as well as useless medical help.

Right now I’m at the end of my rope and cannot take much more. The stress is making my MD and everything else worse. It’s also upsetting my bf seeing how she treats me and seeing how I end up feeling.

I keep saying to her, there’s only so much stuff someone can take.

Hi LastBanana - only just seen your post and my heart goes out to you. I'm sorry I can't offer any real help but didn't want to leave you without an a response. It sound shocking that your DD has had no real help, although my own experience with CAMHS and my DD sadly means I am not entirely surprised. It sounds like she's been passed from pillar to post and I wouldn't be surprised if she is reluctant to engage, but if you can get her to a GP it might be worth doing. She's an adult now and there may be more options. A clear diagnosis would be helpful, and it sounds possible she is depressed.

One thing is for sure this is a very quiet and subdued corner of MN,probably because we are all exhausted from trying to meet our youngsters special needs.
I hit an all time low recently after caring for my CP son for 24 years,finally broke my Superwoman persona and admitted that I needed help pretty damn quick.....there is help out there but you have to be on the brink to get it...so many of us don’t want to admit that we’re not coping....and it’s heartbreaking to thing of so many people struggling not getting that help.....stamp your feet,cry,scream and do whatever it takes to get help.we love our kids(!) so much,obviously,but we have a life too....and are saving the government SO much money,they owe us big time 💐 to all x

*think