Really finding 4 year old very difficult. Breaking point

[Heartofstrings]

I don't even know where to start. I hate him as much as I love him right now. I'm grieving for what I thought having him would be.

He's violent, impulsive, doesn't follow instructions, hurts his little brother, hurts me, doesn't play "properly". He pooed on his bed today. He's pooed on the table and also on the laminate floor (floor needed pulling up as it went in the cracks...it WAS quite old though). He doesnt sleep through. Finds it hard to drop off so we have to sit with him. If we leave him he escalates his behaviour and is very very distressed.
He rarely gives cuddles. Doesnt like kisses. Doesn't like singing. Music he likes if it meets his approval.
He pulls his hair out in chunks.

Yesterday at my mums was just awful. My husband spent his whole time trying to stop him destroying the place.

I cant even have a conversation on the phone while I have him or leave him and his brother alone unattended to put the washing away.

I'm a wreck. We are entitled to 15h preschool finding and if they close I don't know what I'll do. I didn't imagine life would be like this. I'm worn down and tired.

Ps he's actually 4 in 2 weeks

I'm also going to set up a little chore chart for both boys. They both enjoy doing chores. DS is very goal oriented and so loves hoovering, etc. He can tick off a couple of daily jobs as he goes. I think he will find that satisfying and also ground him with a daily routine which isnt time based

That sounds like a brilliant start.

Thinking about stuff mine liked/like:
Dens - sitting inside things, cardboard boxes, cushion forts, tents made out of a sheet over some chairs. They love sitting inside with the iPad and some snacks and blankets.

Walks and a flask of hot chocolate- there is something about warm drinks in cold little hands that they liked, we find a bench and have a mug and a cuddle.

Lights - battery powered fairy lights are a big hit, in the dens or in their rooms - more gentle than a harsh bulb. Eldest has a fibre optic Christmas tree that stays up all year round.

Noise - they all sleep with a fan on, I think mostly for the white noise but also they seem sensitive to sort of “still air”.

Toileting - took us YEARS. Pull-ups at night until v recently, and eldest still has trouble with bowel sensation, and is sensory seeking.

Good to hear that having a plan helps. You clearly love him a lot and he is lucky to have you as his mum.

The shitting everywhere is doing my head in. Today has been on the table, in his pants and on the rug. Argh

Have you applied for DLA? You really must. The toilet issues alone would be enough! And then if you can, put the money towards private assessments to get evidence together for the help and therapy he needs.

The DLA form is hard going - you have to write as though it’s the worst day and night ever. But do it and send it off.

www.gov.uk/disability-living-allowance-children

That’s your first job.

I'm not sure we would qualify. We have no diagnosis of anything

You don’t need a diagnosis. All you need is to demonstrate how much extra care your child needs compared with a typical child of their age.

I applied for DLA for my son, suspected ASD at that point. I of course mentioned that ASD was suspected, that he was on the waiting list for assessment, and preschool backed us up by providing a statement saying he displayed ASD traits.

But the key is demonstrating how much extra care and supervision your child needs, at home and outside, day and night.

Just to add, the Cerebra charity have a fantastic DLA guide on their website. It really walks you through completing the form.

Agree totally re Cerebra

Hi OP, I don't have experience of this, but I do have a similar age child (nearly 4) and I find him utterly exhausting (even though I think he is probably neurotypical and his behaviour is not as challenging as your son's sounds) so you have my sympathy and respect. It might not feel like it but you are doing a great job.

You've received loads of great advice already so not much to add, just a couple of points:

• definitely send him to nursery/preschool for more hours if you can afford it (have you checked whether you'll be entitled to 30h and not just 15h? Depends on your working hours and salary) do not feel guilty about this! I send DS to nursery 3 days a week even though I'm on maternity leave, it does him good and I need the quiet time with the baby.

• definitely apply for DLA, there is lots of helpful info and advice about it here contact.org.uk/advice-and-support/benefits-financial-help/benefits-and-tax-credits/disability-living-allowance/

My son had a hemorrhagic stroke in NICU affecting executive regulation and had incredibly challenging behavior as a toddler/child-stubborn,anxious,obsessive and perseverant so we were referred to developmental behavioral pediatrician as a toddler and dual visits to psychologist. Lots of intense behavior therapies/techniques and medications later he is a calmer and mature 20year old. He isn't developmentally normal or normally behaved still in some ways but his doctors facilitated a therapeutic nursery and inclusion into special needs education. You are in the early stages prior to diagnosis which I consider as hell on earth-you feel alone and overwhelmed-that is very common. You have an inner mama bear-stay in the fight and continue to advocate not just for him but for your entire family. I'm sending you hugs

Hi @Heartofstrings sending you strength to get through the day. This is the hardest part - no diagnosis, no support in place. It can and will get better.

In practical terms I’ve not experienced the poo problem, although my daughter has regressed to wetting herself every day. But it might be worth calling the National autistic society for advice. I think they’re closed over Christmas but will open soon. I know he’s not got a diagnosis but they will still offer support and might have strategies to try.

The other thing that might help is there is a Facebook group called neutering neurodiversity. It is for parents of neurodiverse children and is a very supportive place. Other people there will have experienced this and might have advice.

"there is a Facebook group called neutering neurodiversity"

Do you mean nurturing neurodiversity?
Hope it was a typo

😂😂😂 yes! Sorry a typo!!!

As a SENCo, I have found that children with autism can sometimes be able to hold things together at school but then it all comes out at home. They exert all their emotional energy trying to handle and negotiate the social complexities of a school environment and just meltdown once they are within the safety of own home.
Push for the assessment and also additional support like a portage worker. A mainstream pre-school should have links but you can also self-refer via the SEN portal of your local council. They also have people who can help you through the process (it is a statutory duty for local authorities to provide impartial help and guidance).
Change to routine is a huge trigger so the transition to a new pre-school could be tough. Make your home routines as predictable and stable as possible.

My 4 year old son has some ASD traits, but not enough to reach an assessment threshold. However I do really empathise with how difficult this must be for you and that feeling of frustration. Many times I've been at the park and seen parents playing with their well-behaved children while mine is having a meltdown...it can feel so heartbreaking. Also when family members make insensitive comments, it can be hard. Remember your son has lots of strengths and qualities that make him great and unique - try to focus on those and avoid comparisons to others.

I have no experience with additional needs but just wondering if it's worth having a chat with HV re soiling? Is the stool formed or runny? It just seems a lot for someone to have moved their bowels 3 times by 2pm.
If he is chronically functionally constipated (or holding in due to fear of sensation/pain) it could be overflow stool. The bowel is constantly stretched and nerves/sphincter not working correctly so he would have less control and leakage of newer loose stool around the impacted hard stool that he can't/wont push out. Although it seems counter productive kids can often need to be on laxatives for years to allow the stool to be soft enough to pass without much effort. I'll attach an image which shows what I mean.

Absolutely no judgement for increasing nursery hours to preserve some sanity. Will give you more energy to be more present when you are together. Hope you get some answers soon.

@MissBelle83 Portage is a good step. HV asked us to apply for Portage plus around 12m ago but we don't really have any evidence. The form asks for evidence so I've left it.

@Jent13c I don't think he is constipated. It's such a puzzle. It's very extreme though. He isn't really even urinating in the toilet now. We've always had issues with him wetting himself but this bowel issue is new and extreme. I wondered if it was emotional from leaving his preschool but maybe it isn't

Some excellent recommendations here and you sound like you're already moving forwards. You are right, it shouldn't be this hard and he needs something different to 'mainstream' behaviour responses. It does not matter at this stage about diagnosis or what professionals say - especially those who are not trained in the area they are 'advising' on. He has different needs right now. What you have done in the past hasn't helped so you need to find ways that do help. There are ways, tried and tested, that will make this more manageable. Hell, they'll even help him shine. Consider this pain right now a crunch during your gear change. I totally understand about the grief for the child you expected, so many will. You will likely find though, a completely different kind of admiration for your son once you can understand how he processing and responding to the world.

I wish now that I hadn't down played the behaviours. I wish now that I had insisted upon highly trained and experienced professionals seeing my son. I was so unprepared but still, we adapt.

The break-through for us was a Paediatric Sensory Occupational Therapist. She knew, she opened my eyes. It may be useful if you feel comfortable giving a broad geographical region, there are lots of parent/voluntary sector support services that move a lot faster and with more range than NHS. Some may have links to specialists you may not otherwise see.

It well get better. It will be different. Good luck.

Constipation and overflow is the main cause of faecal incontinence so if it is new it is 100% worth getting him checked out. It seems crazy to take him to the doctor for constipation when he is pooping all day but it is a classic sign. If his bowel is full it would also put pressure on the bladder so that can cause urinary incontinence too. I am a nurse on a bowel ward and see so many people suffering from incontinence and theres so much shame from it but when you get the right things in place it can absolutely be managed. I have a son your age and I've never dealt as well as I should have with accidents post potty training so can't imagine how difficult things are just now.

Thanks. I'm going to email his paediatrician once I have filled in the autism assessment and Portage application. I'll also text my health visitor.

He's currently throwing his toys all over the room. He refuses to go outside in the cold

This sounds really tough and you've had some good advice here. The Explosive Child book is very good and another one I found useful is 10 Days to a Less Defiant Child. I like both those books because they acknowledge how absolutely awful this is for parents. Hopefully the bowel issue is physical but if so he must feel rotten so no wonder he's acting up. Those books both have advice on how to deal with unhelpful family members too. We have had support and understanding from our local PDA group on Facebook, which I.found via the PDA Society website. Melatonin has also helped us a great deal with sleeping issues (but I think ours are coming from ADHD not the ASD).

That really does sound like overflow. We ended up seeing Dr Anthony Cohn about it, he wrote a book about stoolwithholding. It’s an interroceptive thing.

Re evidence, you can just describe what life is like - THAT is evidence. I have used phrases like “massive sensory issues related to toileting, fecal smearing” and “highly sensorially avoidant of XYZ, highly sensorially seeking of ABC.” And then next to each thing you observe, write how this impacts on him and you and the family:

• “which means that we cannot go to public places without full disabled changing facilities as he must be frequently washed after soiling” “which means that he cannot be left alone in a room” “Which means that he needs constant adult supervision throughout the day and night” “Which means that he becomes distressed and violent if subjected to artificial lighting for too long.”

(They’re just examples, you get the idea.)

I had something like a nervous breakdown when we went through this. I wept to my GP and she gave me a short course of diazepam and out me on Prozac and that was a turning point for me personally. Be gentle with yourself OP.

We were approved for sure start support but they were so patronising. I don't mean to sound judgemental but they just talked about how "it's so tough to be a mummy" and were very much geared towards those who had parenting and socioeconomic issues. I'm a qualified teacher with experience teaching SEN kids. I know that sounds so snobby but it just wasn't addressing the need that I had.

I wonder if he's withholding which is then causing issues with him going. That would make sense.

Prior to covid I couldn't take him on playdates to others houses as he was so unruly. He uses his tablet as withdraw and regulation time which I'm sure is rubbish parenting but it's the only chance I have to make him still and not destructive