Help, Please. I am on the verge of cracking. I dont know what to do. Or how to get my point across about DS2

[Julezboo]

This maybe a long post so apologies in advance.

DS2 is 5 years old, for as long as I can remember he has always been a highly active child.

• He eats the same things every day, very rarely tries anything new.
• has zero patience, I mean I know all kids lack patience, but for eg, If I am making dinner, he will cry and kick off and whinge and tantrum because its not "cooking" quickly enough. He honestly asks me not to cook his dinner give it to him "hard" (frozen)
• Bedtimes are horrendous. It takes anything from 1hr+.
• he very often talks in a high pitched squeaky baby voice.
• doesnt like loud noises. Scared of hoover, leccy machine beeping, smoke alarms going off, loud motorbike going past(passed?)
• doesnt like the dark, but to the extreme, ALL lights need to be on upstairs when he is in bed, nightlight wont work, Tried.

-he doesnt seem to understand punishments, time out has never worked, shouting (i know, end of tether) just results in him laughing, taking toys away doesnt work, reward charts/ marble jar.

• quite sensitive to smells, will get upset if there is a smell he doesnt like to the point of crying and crying.
• meltdowns down over going on the motorway (despite this being an everyday occurance)

• can go from being a lovely little boy to an angry, frustrated little boy within seconds.
• hits out at me, dad, two brothers and nan (all people who are with him most days
• he is VERY active, to the point he never sits still.
• Does not listen to a single thing i say.
• doesnt seem to understand consequences, For EG, "stop hitting your brother or you will go to your bedroom"

Teachers say he doesnt listen and seems to go into his own world a lot, and although he has friends, he seems to flit from each one every few days.

His cry (we hear often throughout the day) is VERY loud. BUT when he hurts himself he wimpers very quietly.

He doesnt appear comfortable with eye contact at all. Very difficult to get him to look at me.

We saw a community paed a few months ago. I was in tears tbh and he was a bit dismissive, he mentioned Autism briefly. But said he wanted to concentrate on the sleep issue first. We have had 3 months now of doing the thing suggester with no affect at all.

Few weeks a go he pulled a knife on his big brother and said "im going to cut you" :( DH appeared into the bedroom at the right moment and hit the roof. It was so scary, but I dont think he meant it in a nasty horrible way they were just being typical siblings bickering and he took it to an extreme he doesnt understand.

He also pushed DS1 to the floor last week and kicked him in the head :(

I cannot control him without spending 24/7 pinning him down and tbh im running out of strength, he will soon be stronger than me.

How can I get all this across at his next appt next week? What do you think it sounds like? If I tell Consultant about the knife incident and the kick to my other boys head, will social services get involved? :(

He wont sleep, eat properly, (even though he says hes constantly hungry) wont listen, wont behave, we are at the end of our tethers.

I love my little boy so so much but I am very very scared and heart broken that I dont like him very much at the moment and I am always counting down the minutes until hes asleep.

I would push for a dx (just helping with the sleep issue is not enough, he should be being asessed).

From what you have written and from my expereance (mum of 2 dd's, one with ASD and one with ASD) it sounds like your ds is on the spectrum (probably Aspergers of HFA). Getting a dx would mean getting more help and advice on managing his behaviour. I would be tempted to forget about the sleep issues and the food issues and concentrate on the behaviour (as the behaviour is a risk to your family, he culd hurt your ds1). I'm probably not the best person to advise as my dd's to not have the behaviour issues so hopfully someone will be a long with more expereance.

All i can advise is that its best to work on one thing at a time or you will end up confusing him and making him more frustrated. We have found reward charts have worked quite well with dd1 (but they dont work for every child).

lots of things spring to mind, ADHD, Sensory Processing Disorder?

But lots of these things are common e.g. not liking the dark. But as you say if he is taking it to extremes that is a bit different, but it is hard to convey that to a professional.

I would be completely honest about everything, even the knife, though be clear DH was on hand at the time and was able to intervene successfully.

the thing that stands out most for me is this:

"His cry (we hear often throughout the day) is VERY loud. BUT when he hurts himself he wimpers very quietly."

though i can't say exactly why.

really sorry you are going through this.

write it all down, maybe video some of the behaviour if you thinks it appropriate. and insist on an assessment. No point just focussing on sleep when there are so many factors. good luck

I would tell the proffs exactly what you have told us.I would also start keeping a diary of his behaviours/quirks/issues, what causes them [if you know] and how you deal with them.

You need to show that you are being consistent so that they dont try to blame your parenting.

Keep coming on here for advice and support and feel free to rant

Good luck

I agree with others, write it all down, take dh with you and be strong.

Thank you all. He's gone to mil's for the night so we have a break. Ds1 has dyspraxia and add. So I'm finding it all hard work at the moment :(

Thank you tirednesskills. We decorated a room just for him about two months ago now. He had every say in what he wanted.

I send him to his room for quiet time to calm down n e often puts a DVD on (the same one over and over, it's a photo DVD with back ground music from his nursery class and although they got a new one last week he doesn't like it!)

Tbh it's the anger that scares me the most I don't want it splitting our family up will social services be called? Scares the life out of me

I am going to get myself a little note book tomorrow and write things down. Will also try b take videos of him over the next week until his appt next thurs.

We only really have mil for support close by n she's not in great health ATM x these holidays are already seeming long n mad!

Thank you I will look into that. Forever having to replace broken things :(

Agree don't worry about social services. Most help for this age would be considered as education and provided via school outreach teams e.g. behaviour support or autism outreach. It varies from area to area but sometimes CAMHS (psychologists) will see children.

The disabled children's team of social services can actually be useful as they can provide funding for short breaks, direct payments, sitters, sibling groups etc.

You may want to look into ABA (applied behaviour analysis). Mainly but not exclusively used for children on the spectrum. Getting some training into understanding behaviour and how to change it can really help. Its hard to tackle on your own without any advice. Also agree you need to tackle one thing at a time. In the meantime remove sharp objects to where they cannot be reached. Should any professional visit you can then show you have taken proper precautions.

Sometimes the hospital child development centre will have a community nurse who can help with sleep, diet, behaviour

Start by rewarding when behaving well e.g. not being aggressive. Just lots of praise or tangible rewards e.g. tokens to earn time on computer. Trouble with 5 year olds is it often has to be very immediate for them to understand the link between what they have done well and the reward. As much as possible ignore the behaviour you don't like and distract into something else and then really praise when doing the behaviour you want to see more of. So if for e.g. stays calm when something would usually cause a meltdown then praise for staying calm. Also try and label the good behaviour e.g. I liked it that you stayed calm / quiet etc. So he understands its the being calm / quiet you are pleased with.

There can be problems with understanding or processing language with some of these conditions so try not to say 'don't hit your brother' as they can sometimes just hear 'hit your brother' and have failed to process the first part of the sentence. So try and say say something like 'nice still hands'. That might not be an issue for your child, but its a big issue for my DS. Its easier for him if we say what he want him to do rather than what we don't want him to do IFSWIM

The knife thing could be a lack of empathy. DS3 has autism and he jumps on my head and completely does not understand that this could hurt me.

You can borrow lots of books for free from Cerebra lending library (a charity).

A lot of these issues are to do with control. They can be sensory but with my DS it was behavioural, it was all about controlling his environment rather than a true aversion to the food etc, and once we started ABA and worked through the behaviours most of the problems about aggression, diet etc have resolved or at least massively improved.

DS did the knife thing for a bit. We moved them to a high cupboard, out of sight. If you do that and add a childlock, no social worker will be interested. Which is in some ways a shame, as some direct payment respite care hours would probably help you no end.

Thank you. I think a good friend of mine is trained in ABA as it rings a bell.

The knife was out as my dad was wall papering and it was just after he had left before I got back upstairs to put the tool box away :( my ds1 must have been so scared.

It worries and scares me how calm n quiet the house is without him he's at mil's tonight as the other two have hospital appts tomorrow

Today is a hard day :( Appt tomorrow. I am trying so bloody hard not to crumble into a ball of tears.

Best of luck for your appointment, Julez. It's such a difficult situation for you. I think you should be completely open and honest with them and yes, mention the knife. It's hard for you to get someone to understand the problem if you miss out vital information. Don't be afraid of social services getting involved - if they do it will be to support you, not to blame you.

Good luck tomorrow Julez. I hope you finally get some understanding from someone :)

I feel your pain. Reading your post was like reading about my own son. We have been referred for diagnosis assessment and I think it's asperges.
I agree with tirednesskills. It's hard going but it works. Good luck xx

Hello Lucy locket, I have a 4 year boy who sounds the same as you're . My son has a diagnosis of PDA pathological demand avoidance. If you have a look on the PDA contact Webb site you may find it helpful. I felt I needed to respond to you're email as PDA is very complex and often misdiagnosed, it requires quite a different approach than other asd and can actually be made worse by the wrong approach. You need to recognise that if you're son has PDA , his aggression stems from severe anxiety to control every situation.
I really hope this helps, I know that if it is PDA once you work that out you can begin to piece together you're lives . It's helped us so much , I know as you do that my son can't help it, the difference is I can now help him.
Good luck:)

Good luck today, I hope you get some answers. From what you have wrtten, I have to say I agree with Walter4.

Let us know how you get on.

I was listened to. Everything is pointing to ADHD consultant says. Gonna call me in the next week or so and sort out a script for sleep meds to start with. On phone so will post properly later once boys are all in bed

Oh that is good! NOT that your DS has ADHD but that someone listened!

Walter4 thank you so much I will have a look xx

Did you see Michael Phelps with yet another gold? His ADHD hasn't held him back!

Hi
Dd has ASD dx and we have the violence.
I can't give much advice as like you we are in the thick of it ATM. But I can offer hand holding and hugs.
I hope you get some much needed help, now you've seen consultant.