AIBU to be hating my child?

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My DS is 4 and has what I believe to be undiagnosed autism. Strong family history including his older sibling.
Truth is, I find myself wishing I had never had him. I know how that sounds and I hate myself for it but he is so spiteful, unreasonable and just generally unpleasant to be around. He splits our lips on a regular basis, has given us black eyes, has broken £££‘s of our belongings. He doesn’t respond to behaviour techniques and joke of it is, in my line of work, I am very confident in these strategies.

He is making his sibling’s life miserable to the point where they recently said they wish he’d never been born. I just don’t understand it, he can’t enjoy being like this either, surely.

I have asked for support for whoever will listen: HV, GP, child development centre, social services. All I’ve been told is “in your line of work, you know what you’re doing with him. You’re doing a good job.” Clearly I’m not given how violent he is!

He’s had a stage one assessment for autism but they said as he’s so friendly, it’s unlikely (which is rubbish as was told sake about older child and they received a diagnosis some years later once school picked up on issues.)

I had a call from SS after I self-referred from help and they literally sent me some links through for autism support (even though he doesn’t have a diagnosis) and a link for a local care charity that can fit door alarms. (We’ve had to put locks on kitchen door as he turns oven on in the middle of the night and had locks fitted on windows as he gets out onto the roof if left alone for more than a couple of minutes).

I found the HV infuriating as she said “clearly you just can’t leave him alone at all.” He took a knife out the drawer and tried to cut a melon open when I ran upstairs (literally ran) to have a wee.

I don’t have a second to myself except for work but I dread every weekend as it’s always the same.

Sorry for the long post but hugely struggling with him. Of course I love him but I genuinely feel that I cannot cope with him anymore.

Please can anyone offer any pearls of wisdom?

OP I'm so sorry you're struggling. Having lived with an aggressive child for a long time, I completely understand how utterly soul destroying can be.
I have found Contact an excellent source of practical advice and emotional support. You can book their listening ear service to just have a rant or cry down the phone, and they may be able to support you with obtaining further support.
I have had to work harder than I ever thought possible to access support for my kids, but it is possible. I would ask for a child in need assessment for your son and other children and a parent carer assessment in order to get yourself some respite and find out what further support is available. Again, Contact can talk you through this.
Also, have a think about what support would genuinely benefit you. I've heard people say "take whatever support you can get", but you know your family and your situation best and if something isn't right for you (because the behaviour techniques don't work, or you need respite not parenting courses) then keep pushing until you get something that does.

@baldafrique my daughter is ASC, my brother is ASC, my husband has 3 cousins who are ASC and I’m going through assessment myself at the moment x

Ah I didnt realise your DD has ASC too. It seems so crazy that services discounted ASC as a possibility for your DS with a strong family history!

Sending strength and

The national autistic helpline may be helpful. I would also suggest a Visual timetable so that he knows what is happening when he is at home. When he is doing undesirable sensory-seeking behaviour is there anything he seems to particularly enjoy eg. throwing/splashing etc. Then the challenge is finding appropriate activities that might give him some of the feedback he is wanting eg. splashing water/paint. If he likes hiding away are there other quiet areas you can make - dark dens/teepees etc perhaps with some sensory lights. Weighted blankets can be calming for some children. Good luck OP the fact that you worry shows that you care and are a great mum

Oh my gosh, a 4 year old can split your lip?? Can he be restrained before he gets to this point? It sounds incredibly hard, you definately need support and a diagnosis xx

Hi OP your son sounds a lot like mine who has just been diagnosed with ASD. I wonder whether you would be better off spending your money on an expert to come to your house and work on strategies for dealing with your son, rather than a private diagnosis? As a diagnosis won't get you any actual help and you sound pretty certain it is ASD already.

"Being friendly" is a ridiculous reason to rule out ASD, I would go to your GP and ask for a proper assessment and if you are refused then get a second opinion or complain. This is not normal 4yo behaviour you are dealing with.

One rule of thumb with ASD is to use strategies for a child 2 years younger - that means treating your son like a 2 year old, so lock away or hide all dangerous items or anything he could make a mess with. Can you fit safety gates or locks on doors of rooms which he can't reach/can't open?

If he is sensory seeking, can you give him alternative activities that are more acceptable, eg playing in a water tray, washing up at the sink? My son finds movement calming so we have a rope swing and various things he can move around on inside that aren't dangerous.

Remember that phases pass, my son had a phase of throwing everything down the loo, but it did end and he switched to something else.

I'm so sorry OP, and agree with other posters that this is not typical and it sounds you need more support than you are getting.

If HV isn't taking it seriously, can you discuss this with your GP (if you haven't tried it already)? Maybe bring a list of all of the very concerning behaviours that you mentioned here, highlighting that he is a danger to himself and others? As he has a genetic condition is he known to a paediatrician?

@Whatshouldicallme it was genetic testing done at birth but only paed he is under is the cleft surgeon who did his lip repair, then his palate repair. Next operation will be when he’s around 8 years old.

I had a telephone consultation with the GP and she had very basic suggestions like “have you tried giving him a bath before bed?” And “have you tried ignoring bad behaviours and praising the good ones?” I’m a HV myself so of course I’ve tried all of that. She ended the call with “I don’t really know what else to suggest.” It was actually the SALT who did the ASC referral to child development centre.

Could the genetic condition be linked to the aggression?

How does he find hospitals and medical settings? Maybe the operations etc caused trauma and anxiety?

That is so frustrating that even as a HV you are not being taken seriously!

Is the ASD assessment closed or is he still on the pathway?

I would probably keep pushing for a full developmental assessment from anyone that will listen. I know you've tried and it hasn't gotten you anywhere -- but I'd keep doing what you're doing and hoping that somewhere along the way you meet the person who will finally take you seriously.

Could you ring GP, highlight that you are a HV, provide specific behaviours and areas where his development has not been typical and ask what the procedure is for assessment of disabilities that may be contributing to his behaviour? Talk with the SENCO at nursery and see if they can make any referrals given that you are really struggling at home even though his behaviour is not as severe at nursery?

Sorry I know as a HV you have probably tried so much! Just trying to throw some ideas out there in case there's any you haven't tried yet as I really feel for you.

@baldafrique it is such a rare condition, the only known future impact is learning difficulties and cognitive impairment. His first surgery was at 5 months old and his second was at 11 months so not sure how much he really remembers.

@Whatshouldicallme he has had stage 1 but when they called to discuss nursery observation, they as good as said because he was happy and plying nicely, he is unlikely to get a diagnosis however they will give him a second appt in clinic to see how he is in that setting. I practically begged for a review at home as this is where he lashes out and the more I read about PDA, the more I understand that this is clearly because it’s where he feels safest to let out all the aggression and frustration.

Nursery doesn’t have a SENCO as it’s basically a bunch of older ladies in a hall letting kids play all day. Unfortunately it was a circumstantial choice as only nursery near my daughter’s school that opened early enough for me to get on to work after drop off.

I’ve emailed a request for an EHCP using the template on IPSEA website as PP suggested and they have replied and said it’s been added to the list. I’ve requested a change of circumstances with DLA. I’m starting to think it’s all pieces of a puzzle and I basically need to get each individual piece in order to help progress on.

I.e EHCP will help with illustrating need for diagnosis, perhaps higher rate DLA will demonstrate his care needs including overnight (video monitor hidden in his room averages with him getting up around 21 times a night) and then maybe all of that will finally get us some help.

Make sure when you bring him to the second appointment in clinic you bring a list of all of your observations and concerns at home. Even if they aren't seeing him at home, they should still take his behaviour at home into consideration based on your report.

If he is likely to have learning difficulties given his genetic condition this should also help you in terms of the ehcp, getting assessment etc. Tbh I'm really struggling to understand why you are having so much difficulty being heard and being referred for additional assessment given that he is known to have a rare genetic condition that often leads to learning difficulties.

I do think you will get there, but unfortunately these things can just take too long when families are really struggling! Please try to hang in there

As they won't come to your home to observe his behaviour, is there any chance you could also have video evidence (taken without his knowledge) of him lashing out at home, to show the difference between his behaviour there and nursery?

My DD is mid-twenties now but despite being told when she was born that she was very likely to have problems and when she predictably missed milestones and had speech difficulties, no-one in school or the medical profession would listen or do anything until she was 10 and since then it's been one huge uphill struggle and fight for every little thing.

You are correct about the jigsaw puzzle approach.

Learn how to create a paper trail throughout his life, when you speak to nursery (and later school) confirm who said what in an email to them, then they can't deny what was said.

Never give up, always keep going, you know you're right.

Film him op and show all practitioners his behaviours.

You are very early on in your autism journey with your little boy. I've been there too. I also have an older child like you with autism. It's normal to have feelings like this in the beginning. Even though you have been on this journey with your older child, each child is very different. I would love if you would pm to chat and I could talk more to you about it. You will realise that it's not you mr child you hate, it's his behaviours and it's what's causing them. His autism is not causing these behaviours, autistics are living in a work that has not quite yet caught up to change. This entire world harms been built by neurotypical people and does not accommodate autistic children or adults. It's getting there and things are advancing quickly too.
A typical day for NT person could begin as waking up to alarm,, getting dressed,going to school...all no problems. But only problem free to a NT person. Am autistic person is expected to follow suit but from the minute of the alarm sounding his senses are in overdrive ( like if u woke to someone kicking you in the head, this can feel just as irritating to an autistic person waking to sound of an alarm.this would obviously lead to irritation,and maybe as an adult you could manage your irritation even if you felt like kicking out.) but your little boy is 4, he can't cope and is screaming for his life to change, he is lost, doesn't know what to do,he needs your arms around him and need you to explain that you and him are going to do everything in your power to make sure he is a happy little boy like he deserves. Never so much does he need you as right now. Please on me

Love you don't hate him, you hate the behaviour, and you're bloody knackered and you are all getting failed by the system with lack of support. Sleep deprivation is used as torture. Intense emotions triggered. Not necessarily directed at the child but about the behaviour, lack of support... The situation,

Getting my stuff broken is one of the worst things for me.b

Good luck.

Just read your last update and you are doing a great job pulling it all together. It is very typical for PDA (if it is PDA) to hold it together out of the home... and this causes huge problems getting support and for people to believe you. Can you afford a private (full) diagnosis? The cost can be around £3000 but will mean that everything will speed up. Do see someone who has a special interest in PDA though (if you do think it is this) as many of us have cycled through a whole series of diagnoses before getting what in our case was the right one. The wrong diagnosis and the wrong recommendations can cause more problems....

I didn't pay £3k, less than £2k (for ADOS including a speech and language assessment and ADHD). I think the organisation is a charity though.

I see that this thread has made it into the Daily Record.... What a load of vultures they are