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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To ask you to please just listen.

19 replies

Harleyisme · 22/11/2018 13:32

5 years old my ds was finally diasgnosed with autism it took 4 years of fighting to get this far 4 years of being doubted being blamed 4 years of long nights. Finally at 5 the diasgnosis of autism with Adhd tendancies was given. Relief was great but very much sort lived. I attended every course i was sent on. I did every course available. Ds had very bad anger outburst never slept. He was given alamenzie and melatonin for sleep. We were refered to physiology twice and both times were told they couldn't help. Cahms refused to take him on the numours times he was refered. We spent 9 years pleading for help of everyone no on would help no one. Why? Because hr has always plastered a smile on his face walked out the front door and pretended like everything was ok. He refused to let anyone in and refused to tell anyone what was going. At 9 school decided that he was so good at school yet so violent at home it must be my fault so refered us to SS they came in did an assement and had no concerns at all ds actually told SS his problem was school not home. Still no help offered. 14 now ds is school refusing, depressed, anxious and struggling with even getting out of bed in a morning. I am faced with the prospects of fines and even possibility of prosecution eventually. Having to phone and talk though the same conversation daily witg the attendance officer. All this because no onr believed me what was going on. Hes always be anxious but no one believed me. Hes always struggled but no one believed me constant i can't help or hes not suicidal so we cant help him (cahms). If someone listened years ago if someone helped him before things got so bad maybe maybe he would be able to cope. But no one listened no one. Please of your a dr, teacher, ss, hv basicly anyone who is in a position that could help people like ds please please please listen and take parents serisouly please dont let them get like my ds.

Hardest thing of all is i am right back at the beginning of this very story with ds whos 5 and already nobody listens.

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M3lon · 22/11/2018 13:40
Flowers

What a nightmare you are living. I despair of our society often at the moment.

We have gone a different route...though also hard at times. It was clear from a month spent trying out nursery 2 times a week that DD could not tolerate that environment. We were lucky and had the means to decide to home educate.

She is 7 yo now and at the moment she can tolerate about 1.5 hours in a classroom environment before she needs to get out. We don't know at this point if she will ever make a whole school day.

Keeping her out of that environment means we don't have daily melt downs and anxiety flare ups. Home educating means you don't have fines or SS involvement. She is progressing in her learning and her personal development and though its hard (I cried when I saw her in her halloween worst witch costume because she'd never been in school uniform before and the ghosts of all the back to school pics from friends/family came back to haunt me) I know its for the best in her case.

Harleyisme · 22/11/2018 13:50

I wish i had home schooled i really do biggest mistake i made. Hes a very intelligent young man and unfortunately i don't have the ability to home school him. He has a ehcp and i dont have the ability to deliver whats needed on it.

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M3lon · 22/11/2018 14:37

I don't want to pressure you at all...but are you sure you couldn't home school? The point is that the student is doing the learning and the adult is facilitating. In this way I can help my DD learn spanish even though I have no knowledge of spanish etc.

DD came and told me a whole bunch of stuff about saturn's rings and how word frequency patterns in language work the other day. I don't know anything about either area...but I know how to google, so I could easily find her more material to investigate in those areas as she was interested. Likewise I can guide her on how to verify information online and how to weigh up contradictory sources, but she then investigates what she wants to.

It may very well not be the right thing for your or your children - but please don't think you aren't smart enough to home educate.

Harleyisme · 22/11/2018 14:44

Biggest problem is his ehcp as i have to prove i can meet the needs of ehcp tobbe able to home school him. They biggest parts are around socialising and confidence. I struggle to get him out of the house or get him out of his bedroom if people are here. It definitely would be an awful lot less pressure on me and him if we could take all this stress and anxiety of school away.

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M3lon · 22/11/2018 14:53

I was going to ask what the ehcp was stipulating....I see what you are saying.

We have tremendous 'get out of the house' problems. Our favourite social activities are a board games at Ikea meet, because it is very much dip in and dip out all day - so there is no time pressure, and going walking/biking with best friends.

Maybe you might check out local HE groups and meets and see if your DS would be willing to engage in any of them that might meet the criteria.

Having been a school child and now seen the HE groups in action I feel pretty sure the latter is a more relevant form of socialization for later functioning in life. What goes on in school classes, playgrounds and lunch queues isn't very representative of anything I've been subjected to since!

Harleyisme · 22/11/2018 15:33

I will look in to he groups and have a disccusion with my ds about what he would be willing to do.

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M3lon · 22/11/2018 15:37

sorry - I've responded to your 'please listen' with problem solving advice that wasn't asked for!

It really happens so often that children struggle at school but keep it together just long enough to unleash hell at home...it really shouldn't surprise educational professionals any more. I'm so very sorry you haven't had the support you and your DS deserved. Flowers

Harleyisme · 22/11/2018 15:40

No please dont be sorry you did listen you listened and offered advice which is great. Sorry if i dont sound greatful i am so angry today the position we are in. I have done all i can over the years yet still feel fully responsable for it all.

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BarbarianMum · 22/11/2018 15:44

It is possible that, without the stress and pressure of school, he might be more open to socialising in other ways. After all, very few people want to socialise when they're stressed and unhappy, usually that makes you want to hide away. If you think home schooling may be a good idea why not talk to him about it?

But I'm very sorry that it has come to this, for both your sakes.

M3lon · 22/11/2018 15:52

I wasn't picking up any lack of gratitude at all...I just reread your OP and though...oh I've blundered in with advice instead of sympathy again (I have form for that kind of thing!)...

I'd be utterly furious in your position too.

The problem with feeling responsible is that you will have made all sorts of decisions that have led to this outcome - so it can sometimes feel like that makes you responsible for the outcome...but you really really aren't.

Its like the person that decides to set off 5 mins early for work one day, and because they did that, they were in just the right place to be hit by another car being driven by someone on their phone....

They feel like their decision to leave early makes them responsible for the accident.because without that decision they would have made it to work fine..but they aren't responsible for the accident. The knob on the phone is responsible.

I'm sure you have made every single decision regarding your son in the best way you could with the information you had, and always with his best interests as the highest priority. You did your bit - you absolutely did. The world failed to deliver on its end of the bargain by landing you with consequences that you didn't deserve and couldn't have foreseen.

I very much doubt anyone in your place could have done better for your son. The professionals that were supposed to help you deliver a good outcome for him, on the other hand, should very much feel responsible for the way he and you have been let down.

Harleyisme · 22/11/2018 15:52

Yes there is that possability and i haven't thought about it before now. I am going to have a discussion with him about it see what he has to say and to make it clear that it wouldn't mean xbox 24/7 that he would have to do something for learning.

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Harleyisme · 22/11/2018 15:55

Thank you m3lon that means so much. Its so easy to lose sight and the way you explain it is so right. You make an awful lot of sense thank you for doing so Flowers

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BlankTimes · 22/11/2018 16:45

Have you tried Ross Greene's Lives in the Balance website or his book The Explosive Child?

Do have a look at the SN boards and ask about homeschooling or any issues on there. SNChat and SNChildren are the busiest.

You may well find his anxiety lessens a lot if he doesn't have to mask all day at school. Look at Interhigh for secondary level education, but for now, let him be de-schooled and relax.

You are not the only parent who is not listened to, I've had well over 20 years of friends, family and professionals, some in Education and some Consultants in the medical field, being very dismissive of any concerns and some being seriously verbally abusive.

I hear you. Every parent of a child with SN hears you. We have all been there to some extent, some of us more than others, but I don't know of any parent that hasn't had their concerns dismissed out of hand because someone who really should know better wrongly assumed that they actually did.

Harleyisme · 22/11/2018 16:53

Thanks blank i will take a look at it all.

I wasnt saying i am the only parent not listened to i was actually asking everyone to listen to anyone in our postition and earlier points of of our journey. I know full well that every parent of a sen child doesnt get listened to at some point.

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BlankTimes · 22/11/2018 18:09

I apologise profusely if my message came across that way, I never meant it to, I meant it to say 'Please don't worry because you're not alone'

Maybe I should have said exactly that and then shut up Blush

So sorry again, I agree with everything you said, the whole SN systems would be so much better if only people involved would listen to parents. Flowers

Harleyisme · 22/11/2018 18:27

Sorry i probably took your message the wrong way. My minds not feeling so great today. Flowers

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M3lon · 23/11/2018 12:51

I think what's really annoying about parents not being listened to, is that you could kind of understand it if you were an outlier...or your child was really different to others with the same issues...but the things that people aren't listening to are REALLY COMMON in this group of children.

There is just absolutely no need for professionals to be constantly surprised by what are in fact frequent presentations of behaviour in children with SEN.

I hope you are having a happier day today OP, though I imagine it isn't that likely Flowers

Harleyisme · 23/11/2018 13:41

Thats exactly it it's so common yet they still go down the blame the parent root everytime.

Thanks M3lon I am pretty much refusing to engage in it today its our youngest 4th birthday and i want it to be happy. The school refusal already made our 5 year olds 5th birthday not very pleasant.

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M3lon · 24/11/2018 23:03

I hope the birthday was good! Sorry to hear the previous one wasn't. There are times to fight and times to recuperate...and scheme quietly...

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