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I can't cope with my son anymore.

52 replies

Cak309422012 · 05/04/2022 09:14

He is 10, diagnosed with asd aged 4/5 and most likely has adhd, odd as well as anxiety and ocd traits but only diagnosed with asd. He was signed off everything once we received asd diagnosis, have attempted to refer to Camhs but keep rejecting us. We got given a support worker but she was off sick, then on annual leave, now she's left. We are meant to get a new one but not heard a thing. There is no support.

He is hard work. He is the most defiant child you could meet, won't do a thing he's told, demanding, controlling, manipulative, doesn't think of anyone but himself, thinks the whole word revolves around him. Is nasty to both me, Dp and his sister. In fact, he makes his sisters life hell. Constantly saying nasty things to her, taking things from and threatening to hurt (although he doesn't hurt her, the threat is enough to upset and scare her!). He has no value of anything, constantly demanding money, tried to play the victim in everything. I dread waking up each day, there is no let up, he doesn't sleep and I'm exhausted. I'm really concerned, he swears all the time and seems to care to much on what others are doing, rather than himself. I'm not even sure it's all down to his asd. He reminds me a huge deal of his father (not Dp). My ex is a very self centred man, very controlling and obsessed with money - exactly how DS is buy the things is his dad has had little input in his upbringing!

Ds is 11 and he can't do much for himself like get himself dressed or even make himself a drink. I really try to encourage independence but he just screams and screams.

Despite that I've portrayed my son in such a negative light he can also be very affectionate and loving. It's like a switch! Goes from one extreme to another, often in a short space of time! I don't enjoy being his parent. He's never made parenting easy.

I believe he's going to put one of us into an early grave. My blood pressure is always elevated, get no down time.

He masks pretty well at school, holds it all in all day then explodes when he gets in! To family he behaves pretty well, again all kicks off if we see family when we leave! He knows what he's doing most of the time!

I just don't know what to do or who to turn to!

I worry that it must be my parenting but my younger child is the complete total opposite of her brother despite having autistic traits and some degree of sen herself, she is the easier child!

Honestly, I'm so depressed. He's destroyed the house this morning cos he didn't want to go school, got him to school and he acts like a f**king angel like nothing had kicked off at home this morning g and I don't know where to turn to!

I feel like I don't want to be his mum anymore. He is ruining his sisters life. She is constantly terrified! 😪

OP posts:
newbiename · 05/04/2022 09:37

That sounds incredibly hard. Not really sure what to advise. Have you spoken to the SENCO at his school ?

DownWhichOfLate · 05/04/2022 09:42

How’s his sleep? We found limited improvements by using a multi vitamin which had magnesium in it and also really upping sports / physical activities. Sleep improved and behaviour. But obviously isn’t the full answer.

coffeeisthebest · 05/04/2022 09:42

When he acted like that at drop off did you describe to school how the morning had gone so he could hear? I think you need to start reflecting with him and others on what life is like at home. It sounds hard OP. Have you got support or an outlet for how you feel?

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Imitatingdory · 05/04/2022 10:04

Does DS have an EHCP (or equivalent if not in England)? If so, you need an early review to include more provision e.g. OT, SALT, MH therapies. If not, you should apply.

Does DS take melatonin?

Have you had social care assessments, a carer’s assessment for you and an assessment via the disabled children’s team for DS?

Cak309422012 · 05/04/2022 10:05

School have been spoken to multiple times. They just don't seem to care as he's manageable at school, he has an EHCP with 1:1 support!

I've posted on here because I don't know who to turn to anymore. I try and speak to my mum but she always uses 'well your brother was difficult too' 'which he really wasn't imo or 'just a phase and he will grow out of it'. His dad is useless, been in and out of life since he was a baby, he seen him for 2 hours a few weeks ago and has the audacity to tell me knows what it's like after having him for 2 hours 🤦‍♀️ He has no idea, in the 2 hours he has him once a month or so , he gives in to DS and gives him what he wants (food, money, shop or whatever) so DS probably wouldn't be too much of a problem because he's kept happy with the things he demands! His dad and his family don't even believe there's anything wrong - they don't see the half of it!

I'm at my wits end! I feel like people are blaming me, I was a single mum for the first 3 years of his life. I was quite young but I tried mr best, I always put him first but he's always run me ragged. Even as a toddler he would have awful tantrums for his own way!

Thanks all 💕

OP posts:
Cak309422012 · 05/04/2022 10:09

@Imitatingdory

Does DS have an EHCP (or equivalent if not in England)? If so, you need an early review to include more provision e.g. OT, SALT, MH therapies. If not, you should apply.

Does DS take melatonin?

Have you had social care assessments, a carer’s assessment for you and an assessment via the disabled children’s team for DS?

He has an EHCP. We've had no professional input since he was signed of SALT. There is very little where we live support wise. Camhs has rejected us 😪

No we haven't had the social care assessments, Carers assessments etc. It's something I need to look into. Our support worker (sen support worker) was going to sign post to these kind of things but we are hating nowhere with it! We've been left in the lurch!

Melatonin is in the pipeline. His bedtime is getting later and later.. doctor said he is willing to prescribe but need to keep a diary for a week or two so very soon hopefully 🤞

Thank you 💕

OP posts:
Imitatingdory · 05/04/2022 10:10

The EHCP needs reviewing. IPSEA have a model letter you can use to ask the LA for an early review.

If DS has an EHCP MH provision can be included in section F without the need to go through the normal CAMHS route. If the provision is specified and quantified in section F it must be provided, if CAMHS can’t or won’t the LA must commission independent provision.

Does the EHCP have SALT and OT in it?

If the LA won’t amend the EHCP to include SALT, OT, MH therapies or they are already there but DS needs more &/or different provision appeal when you next have the right of appeal.

Stompythedinosaur · 05/04/2022 10:11

I would say you need to work out what is different at school that means he can cope better there - is it the routine, the predictability, the 1:1 support? If getting to school is a flash point is it the transition between settings that is causing him distress? I'd be trying things like a visual timetable of each day and what will happen and social stories for anything out of his routine. And perhaps you need to keep the dc seperated unless you are closely supervising if he is a risk to his sister. Is he diagnoses with PDA? There might be some resources for dealing with PDA that could be helpful.

You aren't a bad parent, you are just patenting on hard mode!

Imitatingdory · 05/04/2022 10:13

Actually, is DS in Y6? If so, unless it is the one of the rare cases where the LA finalised early you should have the right of appeal at the moment as the LA should have finalised the amended EHCP for next year by 15th February. In which case don’t bother asking for an early review just appeal.

Imitatingdory · 05/04/2022 10:15

would say you need to work out what is different at school that means he can cope better there

OP’s DS doesn’t necessarily cope better at school. Holding it together/masking at school and exploding at home isn’t uncommon. It is the coke bottle effect. It does not necessarily mean the problem is home.

Cak309422012 · 05/04/2022 10:19

@Stompythedinosaur

I would say you need to work out what is different at school that means he can cope better there - is it the routine, the predictability, the 1:1 support? If getting to school is a flash point is it the transition between settings that is causing him distress? I'd be trying things like a visual timetable of each day and what will happen and social stories for anything out of his routine. And perhaps you need to keep the dc seperated unless you are closely supervising if he is a risk to his sister. Is he diagnoses with PDA? There might be some resources for dealing with PDA that could be helpful.

You aren't a bad parent, you are just patenting on hard mode!

Thank you! He has 1:1 at school. He has his issues at school but it doesn't come out as lashing out, shouting etc at school. He works really hard to be 'good' there in his words, he doesn't want to draw attention to himself at school or get into trouble so after holding it all in, it all kicks off. He is extremely anxious about school itself right now as he's picking up that he cannot do the work his peers are doing and not really enjoying it, anticipation of secondary school etc. I don't think he'll be able to do his sats. The school have had the autism team in to hell them help him at school but we need help at home too 😪

He's struggling greatly with transitions at the minute too. He has visual timetables at school which seems to help. We've tried hard to get them to work at home but don't seem to have the same effect, he just wants to change the plan himself here and gets stressed over it.

He is not diagnosed with pda but I think he meets the criteria. I get confused and middle between pda and odd 🤦‍♀️

I do have to keep them separate, it's really hard as after school I will be here on my own (Dp working 12 hours). I'll be going from one room to another to see them (Dd has some degree of sen too), whilst trying to cook (they are always starving after school) whilst seeing to everything else. I'm back and forth between them constantly! I can't take them out in the car together, they can't walk home together. Usually Dd walks in with a neighbour/friend that lives on the street who has a girl her she, they just seem to be near each other as they trigger each other 😪

OP posts:
Cak309422012 · 05/04/2022 10:21

Thank you everyone. Trying to reply to everyone individually in between trying to sort the house out after him having a screaming fit this morning.

EHCP is due to be reviewed soon. Wasn't going to be done until later in the summer but doing it v soon as things have escalated recently!

OP posts:
BoredZelda · 05/04/2022 11:11

OP’s DS doesn’t necessarily cope better at school. Holding it together/masking at school and exploding at home isn’t uncommon. It is the coke bottle effect. It does not necessarily mean the problem is home.

This.

BoredZelda · 05/04/2022 11:12

I’m a little confused with the OP, do you have two sons? Or have you just mixed up your son’s age?

littlestpogo · 05/04/2022 12:00

Hi OP

Just wanted to offer some sympathy as my DS sounds almost identical to yours ( and I have a younger DS who bears the brunt). He has a recent diagnosis of ADHD, anxiety and ODD. Now referred for ASD assessment. I’m also a single parent. I think it’s hard for others to understand that it is really hard to get any home support and most schools really don’t seem to care about out of school.

Some practical things I’ve found have helped is to as far as possible remove demands from my DS at home. So, for example, I now don’t demand he comes to the table to eat dinner with everyone else. I allow him to take his time. I also use the Alexa for him to set timers where he needs transitions and time limits - it seems to make him feel more in control and more likely to comply. I’ve also moved to trying to keep school in a box - I allow him to talk about it and always try to be on his side ( even if this is hard!) or at least show understanding and not react. I’ve also accepted needing to separate him and his DS quite a lot. I’m trying to completely change how I see my parenting in relation to him and accepting that he just can’t do what he is told all the time. He is now much better at going to his room when out of control and loads better at saying sorry. This last bit allows me to try and see how much of his behaviour is driven by fear/anxiety/ low self esteem.

My DS is very badly affected by hunger - particularly after school ( he is now on meds which make this worse). I’ve noticed a direct correlation between this and anger outbursts. Unhealthy but he now has an ice cream lolly as soon as he gets in - this seems to trigger him realising he has to eat and will then eat further snacks. Might or might not be relevant to you!

Finally I am also trying to get my younger DS some support at school. The school has a responsibility to both children. If your DD is being emotionally affected it might be worth trying this?

It is very very hard most days though and I often find myself in tears. The final thing is I am in a group for parents of kids with ADHD - we have a WhatsApp group which is a life saver. Just to know there are others having the same struggles. You might be able to find something similar local to you or just online.

Cak309422012 · 05/04/2022 12:12

@BoredZelda

I’m a little confused with the OP, do you have two sons? Or have you just mixed up your son’s age?
One son, he is 10, 11 in the coming days. So I may have referred to him as 10 or 11 without thinking, sorry 😅 I have a Dd who is 7!
OP posts:
yellowblanketban · 05/04/2022 12:13

Sounds like he's using everything he's got to hold it together at school and 'be good' and can't do the same at home - you get the brunt of it.
Have you considered a SEN school? They are much more flexible and less demanding so have more left to give at home but also are much more holistic and therapeutic. DS goes to an autism school and they deal with everything - education, social communication curriculum, daily mental health support, activities of daily living etc and it's all done from a very non judgemental place with lots of different skilled professionals on staff there. It was a massive weight off us and means we don't really need any agencies out of school as he comes home relaxed, calm and happy and not stressed and anxious.

Imitatingdory · 05/04/2022 12:16

OP, as DS is Y6, you are likely to already have the right of appeal (unless your LA finalised amended EHCP for secondary earlier than the deadline), in which case you don’t need to wait for another review you can appeal now.

Have you had social care assessments?

Cak309422012 · 05/04/2022 12:43

@littlestpogo thank you, it is hard isn't it!

My son gets really hungry after school too and being hungry is a trigger.

My youngest has some degree of sen too but she seems to keep a lot to herself which is so sad 😪 sometimes school is nice for her so she can have some normality with her friends, they are in the same school but don't have much contact during school hours!

OP posts:
MySecretHistory · 05/04/2022 12:43

@Cak309422012

Thank you everyone. Trying to reply to everyone individually in between trying to sort the house out after him having a screaming fit this morning.

EHCP is due to be reviewed soon. Wasn't going to be done until later in the summer but doing it v soon as things have escalated recently!

It should have been done in time to allocate a secondary place by the 15th February.

Depending on where you are in the country there are lots of new special free schools opening up for pupils like him. Have a look.

Cak309422012 · 05/04/2022 12:44

Thanks all I've considered sen school but there really isn't much provision here and limited places. I was told that he wouldn't meet the criteria as on paper it looks like he's coped well in mainstream but worried sick secondary will change things!! 😪

OP posts:
Cak309422012 · 05/04/2022 12:49

@MySecretHistory we had a review and named a secondary school last summer nearing the end of year 5 and it has been sent to me and confirmed secondary place but school have wanted to do another review ASAP as things have escalated. There's things that need to be assed that weren't an issue in year 5. I'm a bit clueless with it all but the previous senco at the school was a bit pants and don't think she did her job well enough but secondary school place has been confirmed.

The senco of his new school is coming to the next review very soon! Our support worker wanted to help with the EHCP review (she specialises in sen children). She has left so we are left in limbo a little bit. Hopefully the new senco at the school will know what she's doing! 🤞

OP posts:
Cak309422012 · 05/04/2022 12:52

He's also already started transition visits at his new school with another child that has additional needs to so 🤞

OP posts:
MySecretHistory · 05/04/2022 12:52

Then you need to be meeting with his secondary school and seeing how they will meet his needs. Have they been in touch?

MySecretHistory · 05/04/2022 12:52

@MySecretHistory

Then you need to be meeting with his secondary school and seeing how they will meet his needs. Have they been in touch?
Cross post- that sounds positive.
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