Just looking for some advice and a hand hold..

[Exhaustedmum11]

Apologies if I'm posting in the wrong section, I just really am struggling to cope and could use some wise MN advice.

My DS, who is six, has suspected ADHD/ASD. His in year 1 at mainstream school and is on a one plan, waiting to be seen by the community paediatrics (waiting times mean our appointment won't be until the end of the year, I suspect)

our concerns are things like he has always been a poor sleeper, wakes early hours and needs me next to him to go to sleep and I can only move out of his room when he is asleep, he has frequent tantrums and meltdowns, Sensory issues since a young age, obsessions and fixations, needs routine or out of routine causes disruption, he does not sit still and is constantly on the go, he struggles to concentrate, everything is on his terms, Motor tics and vocal tics that come and go, stimming? (he chews stuff, randomly shouts, etc) to self regulate? Also, separation anxiety.. there's probably more.

In my heart, I'm sure he has ADHD and definitely has asd traits. We've struggled with his behaviour/s since he was a young toddler, and we were referred when he was three via health visitor due to the behaviours at home and in nursery. When we see the community paediatrics back then, they told me he isn't on the spectrum because he made good eye contact and sat colouring and playing with toys and gave spontaneous information, however he was too young to assess for ADHD, and told to wait until he started primary school. We got discharged.

He struggled in reception, which ultimately resulted in a meeting with his teacher and senco. We discussed his behaviour at school and home and the senco was supposed to refer him, I say supposed to - the referral was "lost" and I wasn't aware until I reached out to the community paediatrics myself to see when his appointment would be, months later..to be told he wasn't even on the system. We had another meeting with a new senco and went through everything again, finally being listened to. A new referral was sent and has been accepted, so it's just a waiting game now.

OK, so I'm struggling so much with my child's behaviour, especially since before the Christmas holidays, when it seems to have got worse, and isn't stopping becoming worse since. His becoming really aggressive, hits me during a tantrum or meltdown, when he is told no to anything he runs around the house pushing things over, breaking stuff, destroying our house, constantly winds up his sibling and is generally being unpleasant. It is ridiculous trying to discipline him because he will hit, at the top of his voice, scream and scream. This happens multiple times a day, even if it's a school day, the mornings are a nightmare, and when his back from school, he explodes so quickly. He refuses to go into class most days, which I have to chase him around and restrain him from running away, I left the school this morning crying because I just feel so alone with it. I don't know what else to do, I'm depressed and anxious, I dread him coming home from school. I'm so scared it's going to get worse. His a big lad for his age and does not stop or think when he lashes out.

Yesterday was awful. All day long, relentless destructive behaviour. I find myself shouting in frustration, especially when he doesn't stop. I just feel like I can't cope. Please, does anyone have advice for me? I want to help, I want to cope, I feel like such a failure. My husband helps as much as he can, the whole family is struggling. I just don't know what to do any more. Sorry it ended up so long.

Look for local parent support groups to you. Even parenting courses aimed at parents of children with special needs can be useful (even if just to meet other parents)

some things that may help.

• routine especially in the mornings, visual timetables and keeping expectations to a minimum.
• does he have a safe space to go to in the house away from others when frustrated? We have a sensory area.
• A transition period/area going into school - Ds used to go in via the office and spend time in a room with sensory toys to get ready to transition into school.
• similary after school have a low pressure in from school quiet time set up.
• don’t try to reason with him when he is in meltdown, stick to low pressure somewhere safe.
• weighted blankets and bear hugs work well for ds

sounds like their could be an element of demand avoidance?

The book The Explosive Child may help you.

I would try to separate out his coping mechanisms (stimming), the consequences of overwhelm (meltdown, violence) and the causes - more difficult.

As @Sirzy mentioned, maybe look at low demand parenting - what are your non negotiables - have to go to school, bathe twice a week, have to eat (but they can choose what/where for now) for instance. Then drop everything else.

We have a demand avoidant 7yo - our morning routine: wake gently, put uniform out but don't directly tell him to get dressed, leave him to it. If 15 mins later he's not dressed, we take his hand and start getting him dressed while talking only about his current favourite subject (Minecraft usually!). He's nicer after breakfast (aren't we all). Put reminders on Google Home to brush teeth, put shoes on so it's not us telling him.

Hi @Sirzy, thank you for your reply.

I will look into the support groups and am willing to try any parenting course to help! Thank you for all your suggestions.

He wakes up at any time between 3-6am, usually the earlier side. This morning was 4am. Usually, he gets in bed with us and goes back to sleep. This morning, he was throwing his hot wheels cars up and down the stairs, which woke up my dh. He refused to go back to sleep or get in our bed. I try the calm down/time out step when his becoming uncontrollable (I sit with him unless his lashing out at me) I also try his bedroom to calm down but before he does he will scream and completely tip his room upside down. I'm in the process of re decorating his room to include a sensory corner, though, so I'm hoping this helps a bit more for the calm down times. He definitely doesn't like to be told what to do, and often, it has to be his own way, and if not, he loses it.

At school he needs 5 minutes brain breaks, is allowed access to the sensory shed, and doesn't go to the dinner hall because he struggled with kind hands in that environment and I'm guessing all the sensory overload that come with it, he goes to a quite room to eat with a few other children. He tells me he doesn't like school and wants to be with me. It's so heartbreaking.

Maybe I'm giving too much direction, which is escalating the frustration at home? What is demand avoidance?

Again, thank you so much. The visual timetable sounds a good idea. He won't get himself dressed, I just do it to avoid an argument in the mornings for school.

Thank you, @UniversalTruth I will check that book out and give these tips a try. I usually get him dressed for school because he doesn't, just to avoid any conflict before school. When I tell him to or say "let's get dressed now" he just refuses or cries for me to do it.

Early morning rising is the worst. Is there an audiobook he will listen to in his room? I wouldn't think there's much point telling him off or sending him back to bed, it sounds like he has needs, not that he's being "naughty".

With getting dressed, I just accept that although on paper my 7yo should be able to do it, something is stopping him and he has to go to school so he's given a chance to do it and if he doesn't, no bother, I'll help him.

Getting ready for school is obviously a trigger point for him, I wonder what bedtime is like?

The early rises are worse in the summer months, despite black out blinds etc. He gets up 3am for the day! He has a TV in his room to calmly watch if he does need too, but he prefers to play or get in bed with us, which is fine despite causing alot of interrupted sleep.

I like the point you made about him having needs rather than being naughty. I think I struggle with this part actually so thank you for pointing that out. Maybe if I look at it more so like this I will start to cope better during the outbursts. I really appreciate it thank you.

Bed time has improved massively over the years - I get him ready for bed, we read a book, the usual bed time routine. Time is anywhere from 7pm-8pm, I hold his hand so he knows I'm there with him, and I just sit until he falls asleep. If I move and he wakes I have to come back again until he is asleep or he doesn't go to sleep. Sometimes I'm coming down to spend time with my dh at 9pm.. sometimes his exhausted and sleeps pretty quickly. Wake up times are always the same though and he wakes during the night (I quietly take him back to bed and sit with him again)

He doesn't like school at all.

I could write your post word for word, my son does have an asd diagnosis though.
My son is 8 and he constantly hits out! Can not even look at him sometimes as that will cause a meltdown.
We have tried reward charts, positive behaviour techniques,being calm,being firm.
I've been on courses, nothing seems to work.
The school have done many referrals to different people and we are doing a EHCP.
School is a massive trigger and not helping his behaviour.
Oh and he is definitely demand avoidance, you have to word things so there is no demands on him even good ones.

He was referred back to peads nearly 2 years ago and still waiting

@Nicetoseeyou1980 thanks for your reply, I'm sorry your still waiting, the whole system seems such a fight, with long waiting times etc. I have no idea what his diagnosis will be at this point and I'm assuming we have a long road ahead.

I will be trying the no demands and see if it helps and watching how I word things with him. Thank you

Scope offer mentoring for parents with DC waiting for an assessment.

You need to apply for an EHCNA.

Has DS been assessed by an OT? In some areas you can self refer. Not all ICBs commission sensory OT, but it’s worth a referral anyway.

Also ask for a home OT assessment to look at making the house safer.

You can also ask for social care assessments - a carer’s assessment for you and an assessment via the disabled children’s team for DS.


Yvonne Newbold’s resources are good.

Does DS take anything like melatonin to help with sleep?