My feed
Premium

Please
or
to access all these features

This forum is for Mumsnetters to discuss undiagnosed illness.

SN undiagnosed genetic conditions

Behavioural issues - how to deal with them while undergoing assessment process

12 replies

ipswichwitch · 08/05/2018 20:18

DS is 4 and currently going through the assessment process for ADS/ADHD - aware he’s too young for ADHD diagnosis but he has an awful lot of features, which consultant agreed with. Still waiting to see the ed psych to “unravel some of his behaviours” as the paediatrician put it .

We are struggling with his behaviour. The meltdowns are bad enough but it’s the overly hyper behaviour that is the hardest to handle. He gets himself worked up into a frenzy and runs about hitting and pushing things over. He’ll trash his room (he does this during meltdowns too but usually while screaming), throwing stuff about and giggling, making odd noises while he does it. He won’t listen, make eye contact or respond to anything we ask him to do and this is worst at bedtime.

We’ve tried changing his bedtime routine to keep him calm but the minute he has to get into bed this behaviour starts and can take up to 9 or even 10 to calm him down. He will be quite relaxed watching tv so we tried shower/bath then a bit of tv but regardless of which way we do things he always ends up a hyper mess.

I’m hoping someone has some advice or tactics we can try, since this is becoming very exhausting. Or at least knowing that someone is going /has been through the same might help me feel less alone in all this - family are next to useless in terms of support, and some relatives just insist that he can’t possibly be autistic/ have adhd since he’s a good talker and is capable of some eye contact Hmm

OP posts:
ipswichwitch · 10/05/2018 20:31

Anyone?

OP posts:
Bluemum18 · 16/05/2018 13:08

Hi 👋 I’m currently going through the assessment for ASD/ADHD my son is twelve and we have been fighting for this for years!

His behaviour is escalating the older he gets and I pretty certain that him being in secondary school has made it much worse. His attitude and total disrespect is extremely difficult. He unfortunately is unable to make friends, we are constantly getting emails from the school.

Being in line with the school and working both together is helpful, I’ve not advise with regards to how best to deal with it as I would also like to know this. We have attended non violent classes as to how to deal with it but it was pretty useless to be honest.

I genuinely feel your pain with how difficult it is and certain family members just cannot understand it!

Stay strong

ipswichwitch · 16/05/2018 21:48

Hi Blue, thanks for replying. He starts school in September and I have to say nursery have been great in terms of getting the ball rolling this far. I’ve been talking to his school to make them aware and they will get their senco to see him during his visit in June.

He has behavioural issues at nursery, but I’ve noticed that if he has a relatively good day there he’s much worse when he comes home - I don’t know if he could be masking or not.

Standard methods of reward/punishment do not work - time out, reward charts whatever. I’m at a loss and nobody has any helpful advice - that’s why I posted!

Here’s hoping we both get the help and support we need, for our sakes and theirs. My friend said the other day that it must be so difficult for us to deal with but I keep thinking how much more difficult it all is for DS.

OP posts:
Stressedmum74 · 01/08/2018 17:06

My son is 6 and he's on the waiting list for autism assessment. His behavior is frustrating. He can go from calm to meltdown in seconds. He screams, cries, throws things about, hits me or his dad and says some nasty things. He's only like this at home. At school he's fine. I feel like a bad mum.

Misty9 · 12/08/2018 21:43

Can I join please? Ds is nearly 7 and almost exactly like your children. We've had a horrendous family dinner where he got ridiculously hyped up and couldn't listen to us at all. I get angry, ds gets verbally nasty and the whole horrible cycle goes on. I find it hard to stop being angry and ds goes to bed crying nobody loves him Sad

He is also fine at school though is having some social problems. He tells us he saves it all for home Confused

DianaXXX · 09/11/2018 20:07

Sounds like my son who will be getting referrals now he is nearly 7 however he doesn't get violet or verbal towards the family
But does get angry at school where he can't control himself and lashes out and has on several occations grabbed a child by the neck in a fight

I don't know if he is just generally an emotional child or there is actually something wrong with him ie adhd

He has been diagnosed at 3 with sensory processing delay

SAMUEL0502 · 17/12/2018 18:46

Hello I've just joined and read your email regarding your 4 year old.

My son will be 4 next February and we are currently waiting for a diagnosis which is a 14 month wait!

I feel what you and your family are going through it's so hard and there seems to be no real help out there! I have found that even the health visitors were useless the only people I have had help from is the nursery which is also an infants school.

Not sure if any of the below will help but they are things that have helped me so anything's worth a try.

Try and comfort blanket or weighed blanket and bed times to help your son feel hugged not sure if your son seeks pressure mine does.

Use first and then don't give anymore than 2 choices.

Keep sentences simple as adults we tend to waffle on.

Have u tried a sensory light in his bedroom to keep him relaxed at bedtime. Build him a little den with books in so it's something he will look forward to going in at bedtime.

My son just won't go to the hairdressers he did up to 2 and half years then it was game over, so I bought calming cutters from Amazon and do it whilst he is asleep! It's a bit tricky at first but a great purchase saves all the meltdowns outside the hairdressers and the upset.

Does your son get upset my noise I'm in the process of trying ear defenders as my son said it's too noisy at nursery. He has been hitting, pushing, biting there and I'm just trying everything.

The best advice someone has told me though is choose your battles as sometimes you can make your day worse by going on at them for just jumping in a puddle or something silly, I've just learnt and still learning to try and keep calm as I find when I get angry it just makes the situation ten times worse!

Hope these help and if you can give me any advice I would be really grateful x

danni0509 · 20/01/2019 22:39

Oh god @ipswichwitch I was just having a look through the sn boards and I've found my ds actual twin! I've never read another dc doing this before I though ds was a one off.

The hyper silly behaviour is so much worse than the asd tantrums and meltdowns.

We have this every day, also bedtimes. He does it out the house on the floor down the street etc it's v v hard work.

Ds runs around absolutely manic, breaking things, hitting, throwing things, spitting, giggling hysterically etc he's like a wild animal during these episodes, won't give eye contact as you say, I can't get him up of the floor, I can't get him into bed even carrying him he's that on one I can't physically carry him, he does it in the bath and I can't get him out the bath, I genuinely can't calm him down. it's a nightmare!

There's no reason, no pattern I've wrote diaries, gone through all my info with a fine tooth comb to find triggers, I just can't work it out.

No help I'm sorry. Not found anything that works. Ds is doing it much more frequently lately as in more than once a day. Really need to get to the bottom of it.

How's things now? I noticed this post is a few months old Thanks

ipswichwitch · 21/01/2019 14:19

Hi danni I’d never come across a child like DS before either, so while it’s a bit reassuring knowing we're not alone I’m sorry to hear you’ve been through it too.

He has been seen by an OT who has identified sensory processing issues - he mostly seeks sensory input which may explain a lot of his boisterous behaviour. He will run at a wall and splatter himself against it, he’s constantly touching (people, carpets, etc), doesn’t seem to register pain like a lot of other kids.

She suggested a weighted blanket SAMUEL, so I’m looking into getting one - there’s a sensory library in my area so I’m looking into borrowing something to see if it will work before buying (these things are expensive!). He also struggles with loud noise, especially in supermarkets, and we’ve had success with ear defenders. He has a few pairs, including one at school as he finds the noise from other kids unbearable at times.

Another win has been with haircuts. He’d meltdown previously and I’d even tried clippers at home with no joy. The breakthrough case when he was taken to the Turkish barbers with his cousin. The cousin went first, then DS’s big brother, and finally he did it. They were fab with him, joking and showering him with lollipops 😂 so now he’s happy to go but only there. And his aunt still takes him because we’re terrified and change with that routine will set him back.

Speaking of routine, he struggles badly with change, particularly unexpected changes. School have been great doing a now and next plan, along with only 4 minutes ina particular task. He’s still miles away from writing anything, but since he’s only in reception he’s within the norm with regard to that.

I’ve started doing a picture chart to show the day’s activities and what to expect so he is more prepared, and another to keep him in track when he uses to toilet (frequently forgets to flush and wash hands).

Our wait for assessment is currently 1 year, he was last seen on October by the clinical psych, and we’ve just received the next appointment for July! Hope you’re all making progress wherever you are in the waiting game!

OP posts:
danni0509 · 16/08/2019 21:18

@ipswichwitch I know it's been a while since I last posted, just wondered how things are going?

ipswichwitch · 16/08/2019 23:11

Hi danni0509! Quite a lot has been happening - he has just got his asd diagnosis. He has sensory processing disorder (mostly sensory seeking), and he scored for asd in his assessments on areas like conversation and reciprocity (conversation is often one sided and there’s no give and take); his play is behind and although his speech is excellent, he tends to quote lines from films and shout out odd phrases.

Things have calmed a bit at bedtime, but we’ve stuck to a routine and do now and next with him. He does struggle to switch off at night though, so one of us will sit with him until he’s asleep otherwise he’s up and down and gets himself hyper.

Haircuts and nail cutting are still difficult - nails get cut while he’s asleep as he has meltdowns if I even try. We’re slowly getting him used to using a nail file though. Haircuts are still done with SIL. I tried to take him and it was a complete disaster. He can somehow keep it together for her, and we can deal with the fallout later. I’d let him grow his hair but he hates it getting longer - says it makes his head sweaty!

Meltdowns are pretty grim. I’m sporting some fetching purple bruises on my arms from the latest one. It’s all the change in routine with the summer holidays and he’s struggling.

How are things at your end?

OP posts:
BlackeyedGruesome · 30/10/2019 10:12

how is he with caffeine?

apparently, caffeine has a calming effect on kids with adhd.

autism and adhd together not got experience of but the meltdwons with autism I have.

can you cut his hair a bit at a time? I have done it while ds was asleep. had to deal with the pony tail in the morning of the bit that could not be reached.

Please create an account

To comment on this thread you need to create a Mumsnet account.