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

(53 Posts)
DailyMailDontStealMyThread Thu 18-Jan-18 22:35:17


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.

flowers to you all

DailyMailDontStealMyThread Thu 18-Jan-18 23:20:34

All is calm here this evening. First night DD has taken a very small dose of melatonin and is now soundly asleep.

Normally up with her till at least 1am so I’m off for some rest.


sneezeandclench Fri 19-Jan-18 16:00:32

Hi, I am a mum to 4 daughters. My oldest sometimes has depression and anxiety but is happily married with children and I am so lucky she just lives around the corner from me. My other 3 are 17 with severe OCD and anxiety, 16, just an 'normal' obnoxious teenager and my baby, she is 15 and has just been discharged from an adolescent psychiatric unit with psychosis and is being investigated for autism. My hands are full and though I am tearing my hair out at times they are all gorgeous and I love every bit of them.

I have read a lot of posts on this and the child mental health thread but as you say, they are really quiet and haven't felt brave to post on them until today, so thank you.

Today, my youngest has missed an appointment to look at a new school unit for children with medical issues as she couldn't cope with going out, she has also seen a lady from the early psychosis team and I have fielded a lot of phonecalls and made appointments for the other agencies who are involved in her care. I am tired as I haven't slept properly since DD15 came out of hospital. I also have schizo affective disorder so it is very important I keep well, my DH is fab at trying to reduce my stress so I can look after the girls.

DailyMailDontStealMyThread Fri 19-Jan-18 19:41:01

Hello sneeze thank you for joining me on our bench, hopefully we will be joined by others who know a lot more than I do, I’m winging it over here but I’m glad I’m not alone.

I have 3 DDs, eldest is a teen with every drama that comes along with being a teen and DD3 is just little, watching everything that is going on with her sisters.

DD2 has had a good day after yesterday and thankfully she slep all night for the first time in months so there is our positive for today.

I only get time to post at night time but I can read during the day and being able to read other posts really helps. If you are reading this and haven’t posted yet, come on in I have chocolate and Gin because it’s Friday smile

blimppy Sat 20-Jan-18 18:40:41

Can I join? DD1 (18) has aspergers and Anxiety. Also managed to injure her ankle/foot today in dance lessons and is lying in bed feeling very sorry for herself and being utterly unreasonable, e.g. wants to eat but doesn't want to, hates lying there but cannot get up (she could hop or accept help, but won't) etc. I'm breathing deeply!

ShabbyNat Sat 20-Jan-18 21:23:24

Hi, can I come & sit on your bench please?smile
I have 2 daughters, the eldest one is 18-19 in about 2 weeksshockshock & has learning disability, speech & language disability, gross & fine motor skills disability, type 1 diabetes & is about to start counselling!!
My younger daughter is 17 & suffers with anxiety/panic attacks & also has type 1 diabetes.
I find it hard sometimes coping with the extra stuff going on, on top of the typical teenage stuffblushblush But kids seem happy most of the timesmilesmile
It`ll be nice to have chats here with hopefully new friends!!

sneezeandclench Sun 21-Jan-18 08:12:05

Hi there Shabby, blimppy and Daily. It's nice to read about your daughters, it's funny how we all just have daughters though smile. I'm one of four girls myself although my mum did go on eventually and had a son. I love my sisters and brother but it is hard being the only one in the family with poorly children. My sisters try to be supportive but obviously they are very busy with their own lives, although they are happy to be called on when necessary. My mum however is useless, always has been so I just limit myself to a brief phone call once a month.

Touch wood, my youngest DD has had a fairly good day or so now even though there have been a lot of visitors from various organisations checking up on her. She has gone out for quite a few walks on her own, although I do panic a bit until she is safely back home. She has been good taking her meds too so has slept a bit better as well.

Hope you all have a good day today, take care.

DailyMailDontStealMyThread Sun 21-Jan-18 15:19:55

<waves to newbies> Lots of room left on the bench and everyone is welcome.

Hope you have all had a good weekend it’s been a bit up and down here but not too bad.

DD can be very demanding and it’s lots of work where everything has to be here way or all hell breaks loose.

I feel like a referee most of the time. She thinks nothing of just taking other people’s stuff.

The melatonin is a god send and I’m hoping better sleep will naturally make her calmer and less agitated.

VodkaKnockers Wed 14-Feb-18 20:09:49

Hello. Can i join?

Today after 10yrs of fighting and having my parenting called into question, my 15yr DS has been diagnosed with autism.

Currently feeling both angry and sad.

Sad at the missed opportunities and support that could have really benefited my son.

Agry that this has taken 10yrs and an suicide attempt to get here

2old2beamum Wed 14-Feb-18 21:00:52

Thankyou DailyMail (cannot believe I have written this) for starting this thread. As you say there is not a lot for older SN people.
May I join you?
I am mum to many but have a DS age 19 who is deafblind and has CP, and a DD age 12 who has Emanuel Syndrome.
Life seems a long struggle getting support.
Good luck to you all.

eggsandwich Fri 16-Feb-18 15:50:34

Afternoon all, pulling up my chair to join in, all relatively quite here as 17 year old ds has gone for respite for three nights so am sitting on the sofa watching recently recorded Most Haunted programmes that I can watch without having to keep an eye and ear out for ds being up to mischief grin

When he’s away I tend to reflect on the good/funny things he does like finding the icing sugar which was well hidden in the cupboard and him covered white in it and the room filled with powder in the air and these beautiful big blue eyes smiling at me and then me spending weeks trying to not stick to the leather sofa every time I sit on it.

Thinking about the good/funny times helps with the tough times.

biscuitbasket Sun 18-Feb-18 17:27:00

Hi all, have 3 kids, 17 is diagnosed with high functioning autism, 15 year old has some yet undiagnosed chronic illness, and dd is 13.

Find the lack of diagnosis so hard. Occasionally people ask what they can do to help, and I think 'if I bloody knew what to do I'd already be doing it'

vickibee Wed 21-Feb-18 06:30:38

My son is only 11 but due to start big school in September. He is hf asd and suffers from anxiety and panic attacks. The transition is going to be really difficult as he finds change in routine difficult.we are in process of appplying for an EHCP.
We are fed up of jumping through hoops to get any support or even recognition that he has additional needs. Because he is hf he has been overlooked at school for support. It is all so draining and socially isolating. On a plus note he has recently been allocated a lovely family support worker so it finally feels like we have an advocate

CheeseCakeSunflowers Wed 21-Feb-18 22:09:57

Hi, I have 2 ds's Eldest is 24 with ASD, younger is 21 and NT. We've been through many battles, I had to pay for a private diagnosis when he was 21 after having been searching for answers since he was 3. We are now at the point where he lives away from home during the week and comes back weekends. He also has a part-time job.

QueenStreaky Sat 03-Mar-18 14:08:27

Room for another one?

Just found this thread (I don't MN as much as I used to). Thanks for starting it, DailyMail.

I have ds age 19, ASD and ADHD, currently in sixth form college and applying for university shock.

He was home educated from age 10 up to starting college, which I think is why he does so well now. He still has his share of difficulties but nothing like how he'd have been had he stayed in school. He had no support whatsoever and was just repeatedly punished for his SNs. I was furious at the time but now I'm relieved we were pushed into deregistration.

I can empathise with those who've had to go private for assessment and dx. It took several attempts to get ASD dx (eventually came at 7, through second opinion referral) but had to go private for ADHD assessment age 10 because NHS cocked up (long story).

We also have EHCP, obtained while he was home educated. It's been great for ds, but that could be because we started making enquiries into college placements in advance and established relationships with learner support staff, and insisted they were involved in transition planning.

hennipenni Sun 04-Mar-18 21:46:18

May I join in? I have 3 daughters, the youngest is 17 and as a result of a brain haemorrhage 14 months ago now has an acquired brain injury which has left her with learning difficulties, speech and language issues (aphasia)and mobility problems amongst other problems.
Outwardly she appears to be a ‘normal’ teenager, people just don’t understand the complexity of her problems.

QueenStreaky Wed 07-Mar-18 08:24:10

Morning! That sounds like hard work henni. It's always difficult when the disability makes the person appear 'as though they don't have additional needs. It's been something we've faced throughout ds's life too. Fortunately he's had excellent learner support in college has been excellent because of very high awareness. You don't get that everywhere, do you? sad

Noimaginationforanotherusernam Sun 11-Mar-18 17:28:57

Can I join..
Two of mine have Tourette’s syndrome. They developed it as adolescents out of the blue. I don’t exactly know if that means special needs or not because my daughter (18) is at Uni, and my son (16) is pretty good academically. But my DD also has ADD and needs a lot of support to stay on track. My DS has his own struggles - he hasn’t come to terms with having Tourette’s, and has OCB so is self critical.
The trouble is neither show it in public - so even though they’re on meds for Tourette’s- friends and family don’t believe me, and don’t know how stressful it is. That’s not the kids fault, but it is wearing me down.
I’d quite like to sit on a bench for a while!

QueenStreaky Mon 12-Mar-18 09:42:52

Looks like there's a few of us whose kids' disabilities are on the 'invisible' side. I do think that makes things harder to get recognition and support. It's also hard to offload to friends because (IME) there's a tendency for them to say "Oh, they're all like that!" then they waffle on about their own kids <sigh>.

Ds went out for a drink with some friends on Friday night, got home surprisingly early. Turned out he'd been chucked out of Wetherspoons for throwing up in front of the bouncers blush. He'd only had a couple of beers, but he'd been a bit viral too so I think that added to the mix.

The plus side is that these were friends from college and he's actually looking forward to the ribbing he'll get this week. Back in the day, he'd have punched anyone who dared to laugh at his misfortunes so that's a huge step forward wink.

Noimaginationforanotherusernam Mon 12-Mar-18 11:54:04

It makes it so hard to get support. Or even just some understanding from others as to how life really is.
I know everyone has their own problems so can’t give extra to support me, but my experience is that most people think I have an easy life because the kids look normal in public.
But if I say how things really are people tend to think I’m either being mean about my own children or that they are badly behaved! And I just want to say it’s an illness, I can support them, I just need someone to tell me I’m doing ok. It actually helped to write my first post.

I’m glad your DS had a night out QueenStreaky, my DD has also made friends when she started Uni. She lost many friends in secondary when she got ill, and she struggles to make new friends because she worries about telling them about herself. But she’s made new and genuine friends lately (I hope). Maybe the adolescent years are the worst?

QueenStreaky Tue 13-Mar-18 13:10:55

Yep, I think a lot of us walk that fine line between 'mollycoddling' and 'abusive' in other parents' perceptions. You just can't win, can you? I have to admit, I find it easier now that ds is a young adult, but when he was a young child it was dreadfully hard. It's as though if you explain challenging and inappropriate behaviour by explaining "He has autism", you're regarded as condoning or excusing the behaviour, yet if you publicly challenge it and try to guide them, you're helicoptering sad. I don't think people look that closely at other folks' children when they're a bit older. That's been my experience, anyway.

QueenStreaky Tue 13-Mar-18 13:14:20

I also think it's difficult when your child achieves quite highly in some respects, because that tends to overshadow the deficits. In my son's case, he was always a whizz at Maths and sciences and I was expected to be grateful for that, despite his very obvious poor social and communication skills. I used to tell people that there's no point in being a Maths genius if he can't cross the street without punching somebody (which was true at the time). But I got the impression that I was considered as greedy, dissatisfied, and had disproportionately high expectations for him, just because he had something that he was better at than their kids. All I wanted for him was a normal childhood, with a few friends, that all the others had but he didn't.

Noimaginationforanotherusernam Tue 13-Mar-18 17:45:27

I know, I think people only understand what they can see for themselves. Asking them to empathise with something hidden is just impossible, and it leaves me (at any rate) feeling pretty alone in the world.

But now I know I’m not alone! That feels a bit better.

QueenStreaky Tue 13-Mar-18 18:29:32

That's great, Noimagination smile. It's nice when threads like this get results.

Two nice things today - we got ds's Student Finance and DSA application sent off (hurrah!), and he helped me bake a cake. That's the sort of 'normal' stuff he could never manage when it was What You Did With Your Kids at primary school age, so it's lovely now that he's mature enough to do it without whingeing wink.

Vodka, how are you and your ds getting on now, post-dx? Is he handling it ok?

hennipenni Wed 14-Mar-18 08:23:14

DD struggling with neuro fatigue, she knows she has to pace herself but all she wanted to do was meet her friend for a coffee, I dropped her off (literally a 30sec walk from the coffee shop) and picked her up, her friend waited with her as she was worried about her until I got there. Really messed her up for a couple of days, sleepy, feeling sick, speech altered etc, all the things we have to keep an eye on as they are signs of a further bleed/brain swelling. Very hard to tread the fine line between worrying she’s ill again or just normal for her activity levels at the time.

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