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Please can anyone advise/help - ADHD/ODD in 4 year old?

(18 Posts)
password8180 Thu 03-Jan-19 13:10:41

Hi,

I am really really desperate for help/advice re my 4.5 year old DS and his behavior/obsessiveness. He was born 6 weeks prem, he stopped growing at 32 weeks and was low birth weight, had breathing assistance, infections etc He was late with all his milestones, he has diplegic cerebral palsy (mild), periventricular leumomalacia and complex motor tic disorder diagnoses. Despite this, you would not be able to tell by looking at him that anything is really wrong. Since the age of 2 the issues with his behaviour have been getting progressively worse. He has had an assessment for ASD and they said his communication skills are too good so he doesn't have it. I am convinced he has ADHD but they won't assess him for this until he is 6. I am also starting to suspect he may have ODD.

I am really starting to struggle to cope with him and I am desperate for help but I feel that people are not taking me seriously, including my own family who are old school and don't believe in things like ADHD, it is our parenting or that [redacted] is an only child etc etc (grrrrrrrrrrr).

His teacher has big concerns about him and asked for a SEND assessment as she thought he may be on ASD. The school have told me everything comes down to dunds and they are carrying out 3 monthly 1 hour observations (which is just rubbish so I am about to start to fight with the school). They have implemented some things, he has ear defenders as he doesn't tolerate noise, he has a chewlery bracelet as they have identified sensory issues, he has individual instead of whole class instructions etc. The teacher struggles to cope with him and has asked for additional assistance with a TA but it all comes down to finances.

The issues we have are;

Not following any instructions we give him, no matter how simple, it is like he can't hear us, we ask and ask over and over in different ways but the only way to get him to do something in the end is to threaten him 'if you don't do this you can play with X' etc (there is nothing wrong with his hearing)

Huge temper outbursts over the most miniscule things, full on meltdowns, unable to communicate with him at all.

Violent outburst during the above, he will hit me in the face, punch me, knock things over, throw things, pull posters off his wall etc

Hitting, pushing, ramming his head into you as part of everyday communication, not just when in an outburst

He has starting to blame other people for things or blatantly lie, even when I point out to him that something is not true

Obsessive behavior (had to ban all computer/electronic games, ipad etc)

His teacher says he doesn't have any friends in class. He is unable to play by himself he needs constant attention from an adult. He flits from one thing to another, he can't stay focused.

He almost seems to hold it in all day and then literally as soon as I pick him up he just unleashes and it's terrible. Yesterday we were still in Kids club and he decided he didn't want to go home and lost it, hitting me in the face over and over in front of everyone. I tried to control the situation as it was so embarrassing but he just lost it and in the end I just cried for around 2 hours as I don't know what to do anymore. I have researched things and I'm currently working with him using The Incredible 5 Point Scale.

To be honest I could go on and on. I'm so exhausted and I don't know what help I need to ask for. He has a paediatrician and I have emailed her office this morning to ask for an appt. I plan to tell her everything and ask for a referral to a child pyschologist.

If you can offer any advice or help please please do let me know.

Thanks

[redacted]

*This post was edited by MNHQ to remove identifying information*

grasspigeons Fri 04-Jan-19 16:03:23

Hi [redacted],
I am sorry to hear what you are going through. I don't really have any advice which probably isn't very useful, but I just wanted to give you a hug really.

I don't know much about adhd and odd - I know a little more about autism and pda

In terms of not understanding instructions I wonder if visuals would help. I know schools make use of visual timetables but also have cards with pictures on eg a pair of shoes, which you hand to the child and they know to put their shoes on.

It sounds like that big meltdown was around transition, so perhaps you can try something like a timer you carry round with you and turn over so he can see it will be time to go in 10 minutes and do the 10 minute, 5 minute, 2 minute warning. Perhaps with a visual of home.

In terms of meltdowns the PDA website has some good advice on more oppositional behaviour that doesn't respond to the more typical routine, reward chart, consequence, praise and visuals type thing - which might be relevant for you.

I know it probably feels like there is no warning or rhyme to his behaviour, but if you keep a log of it for a while, you might start to recognise that its specific things like transition, or shoes that are the problem and then it might not feel so insurmountable.

*This post was edited by MNHQ to removed identifying information*

grasspigeons Fri 04-Jan-19 16:07:15

Take the log to your appointment so you need something like
date, time, setting, trigger, behaviour, what happened next all written down neatly, as its so hard to remember whats happened.

you might have (for example)
04/01/2019 / 7pm / family bathroom / asked to brush teeth / threw toothbrush at me and hit me / cleaned his teeth after negotiating no toothpaste

password8180 Fri 04-Jan-19 20:51:42

Thank you so much for replying, I really appreciate it. I will write down the triggers...it seems to be everything at the moment but if I write it down perhaps somethings will jump out at me plus I can take it with me when I go to see the paediatrician. Yesterday and today have been bad days again. He has started to soil himself numerous time through the day (number 1 and 2's), he does it in different settings. When asked why he either has no reason or it's because he didn't want to stop doing something he was enjoying. Going to bed tonight has so far taken an hour, he has hit my husband, trashed his room, screamed and is still awake, all because he didn't want to listen when my husband was reading his story and then, when the story was done, he wanted them to be read again. It's so hard when you can't reason with him or explain anything. We're all exhausted.

Thanks for replying smile

pumpingRSI Sun 06-Jan-19 06:41:41

Hi, I have a ds who is 5.5 and we are awaiting diagnosis of ASD , poss adhd but combined with either PDA or ODD. It's been a long exhausting road. And you don't NBA's to hear me bubble on, my top tips for how I cope:
- school - I have regular meetings with them, they give DS a 1-2-1 teaching assistant even tho they only get limited additional funding. We are in touch with various agencies and have ways of making it work like lots of options to leave the classroom and focus or play or run it off elsewhere. Not being in big playground as he can't cope, discussing things beforehand to prep.

- at home, I judge moods. If it's good we can do more normal things, or challenge him more, or pick up on undesired behaviour, if the mood is bad it's about being gentle, firm but lowering expectations and doing more him centred activities

- my behaviour, I try straight down the line, but gentle. I found if I go to an anger / frustration scale of 3, he'll go to 5. If I'm 7, he'll go 10. So I am incredibly practised at trying not to lose my shit, smiling, asking directly looking at him or touching him so he's more "present" with the request. Lots of prep if what will happen, 10 min, 9 min countdowns to eg leaving house. I don't ask again and again for eg shoes to be put on, I go over touch in shoulder, check he's listening and ask. I offer help, a lot. Do you need help? This can be with managing behaviour, a task, fun thing, struggling with something.

Our biggest challenge is temper tantrums. We try and catch the behaviour before it goes tits up, offer help and support, manage expectation, make consequences clear and firm but in a gentle non threatening way and try to grit teeth and hug, smile, etc our way though. I try and tell him when I've had enough / he's pushing me too far but this is new and I'm not sure he cares if he's a bit 'high'.

It often feels like I have a teenager, and a two year old all at once.

I don't really do play dates as it makes him all a bit controlling and it's hard work. Plus only a v few are willing as most parents see us as an issue to avoid. I have friends who understand a bit, but parental don't really believe or want to understand. His issues are mostly at school now as we have enough if s controlled environment that it rarely 'goes off'.

My husband is vaguely on board with this but is in no way as flexible, adaptive, or perceptive. I think there are ASD issues there too.

Hugs, thankscake & wine for you. Keep on with paediatrician, get better st working with school (don't battle as they could just say they can't cope with him and kick him out), but see where he's struggling and what their suggestions are, advice of Senco.

I could prob do with better self care and time out. And prob boxing lessons to vent the having to keep controlled all. The. Bloody. Time.

Sorcs Sun 06-Jan-19 20:39:48

Password8081, I have the exact same issue with my 5.5 year old DS who has recently been diagnosed with ASD & ADHD. I know exactly how you feel.

We feel like we are at our wits end with everything & don’t know where to turn to get help.

Pumpingrsi has some great tips there which we are trying to implement but it’s very hard when ur husband is not on board as much as you are & undermines a lot, it drives me nuts.

Is you son worried about going back to school? My ds has been in a foul humour all day and we’ve had numerous meltdowns over little things. He’s really anxious about going back to school.

I can relate to all the violence too, we have spitting, pulling hair, badly hurting his little brother, kicking & punching! It’s horrendous.

Big hugs to you, you are not alone.

minipie Mon 07-Jan-19 23:18:03

DD has a milder version of your DS’s history (6 wks prem, very mild CP) and at age 4 she was showing a milder version of most of the behaviours you describe. I was convinced she had ADHD, PDA or ODD. But age 6 she is like a different child, in a good way.

With hindsight she was completely and utterly exhausted, and that was driving a lot of her behaviour. She does also have some underlying immaturity in terms of self control, dealing with transitions etc - this can often be the case with CP I later found out - but it was being hugely exacerbated by the tiredness.

How is your DS’s sleep? And does his behaviour go way downhill as the day wears on?

Of course maybe he does have ADHD or PDA or something similar. But given he has CP which will be tiring him out, especially now he’s trying to keep up at school, it may be worth factoring in extreme tiredness as part of what you are seeing?

password8180 Tue 08-Jan-19 09:06:14

Thank you so much pumpingSRI, Sorcs and minipie for your responses. It is lovely to hear from others who are experiencing the same issues, sometimes it feels like it's just us sad

PumpingRSI I really do feel that I need to learn to cope with it better...I have lots of patience and then one thing just tips the balance and afterwards I wish I'd dealt with it better instead of raising my voice etc. I am definitely going to do some research about ways to deal with his temper tantrums.

He did better yesterday, it was his first day back at school. He did get in trouble in class, I can't work out if he hit a child or threw a ball in their face. He told me he did it as the other child 'got too close' to him. I will see the teacher today so will find out more, otherwise there were no soiling accidents for the first time yesterday so that was a real achievement and he got a lot of praise yesterday. I do feel he copes much better when his routine stays the same.

He definitely has trigger points that I know about, the biggest ones are hunger and tiredness, if he is hungry or tired he will lose the plot on an epic scale. Otherwise I can see some of the temper tantrums coming on but most of them come from nowhere. He recently completed an ASD assessment centre with 4 specialists and 2 of them commented separately that he 'goes from 0 to 60 in a second with no apparent cause' and that whilst in this he can be physically aggressive. Yet they did not offer any assistance other than following The Incredible 5 Point Scale.

I am going to call the paediatrician's office today to leave a message for her to make an appt. I'm going to ask for an appt at the school as well.

Thank you all for your responses, they are such a help.

password8180 Tue 08-Jan-19 09:08:54

minipie, thank you. He generally sleeps well. If we go to my in-laws and he isn't in his own bed he never, ever sleeps through, he always wakes around 03:00 (it puts me off going to be honest!). At home he has generally always slept ok, he is startig to wake a lot in the night for the past 6 weeks or so. Sometimes he has nightmares, other times he is just awake and wants to come in with us (which we have stopped him doing) or wants to talk. He is on the go a lot and does get tired.

MummyMilla Tue 08-Jan-19 12:11:10

@password8180

I could've written your post about my 5.5 yo - he was diagnosed last week with ADHD. We'd reached the point of exclusion before xmas due to violence at school and so we sought a private assessment as the NHS one isn't due until May earliest.

Have you asked your GP for a referral too? Our previous school were great but you going to GP does also help.

We're on day 4 of medication here and <touches wood> it seems to be really helping. My son's behaviour would also deteriorate when hungry and tired.

Book an appt with his teacher to look at his school day and help them identify what you perceive to be trigger points. My son's school keep a snack box for him and he's allowed to discreetly have one if he's struggling. Also, simple things like getting him front of the queue at lunchtime, holding someone's hand when queuing up.

At home, try as MUCH as possible to focus on positive reinforcement. I pick the battles and have some firm non-negotiables. Hitting his brother for NO reason gets time out. I am more lenient with retaliation as I know he simply struggles to rationalise things the same way.

And praise. Every small thing you can. Give them small jobs that will help boost their self esteem and shift you all away from the negative cycle that we ALL get caught in.

x

password8180 Tue 08-Jan-19 13:58:58

Hi MummyMilla,

We have thought about a private assessment. We have read that it costs thousands though. I will have a look to see if there is somewhere locally that is reasonably priced. You must have seen someone very quickly to get the diagnosis already? We discussed medication with his Neurologist and initially I was against it as she was talking about sedatives but now she is talking about a stimulant that will make him more focused, control/stop his tics and calm his hyperactivity - I will definitely explore it as we all cannot continue as we are.

I am going to try to focus on praising him and work more on using signs and touching him to get his attention rather than everything being verbal over and over.

Thanks for your advice, much appreciated!

password8180 Tue 08-Jan-19 13:59:32

Who did you see...was it a child psychologist or behavior expert?

Thanks

pumpingRSI Fri 11-Jan-19 15:31:36

This has helped me to realise there are others out there too with the same.

Tiredness and hunger are our biggest triggers and at school it's others doing what he didn't expect, or messing with his stuff.

We do snack box at school and playing in smaller groups which is supervised. Work with school to come up with strategies. Is there a behaviour team at your local authority?

Biggest difference I've found is saying yes to almost everything I can, even tho I feel like no. Unless it's unsafe or really impractical. I felt like I used to say no a lot.

password8180 Mon 14-Jan-19 19:42:05

It is good to know it's not just me. My husband and I are feeling totally overwhelmed with everything. Thankfully we have got an appt with the paediatrician in 2.5 weeks, we know the big delay will be the appt to see the child psychologist (fingers crossed for the referral).

Each day at school is worse. We are still having issues with soiling. He is getting a red card at school almost every day, he is hitting other children, not doing what he is asked by the teacher, wandering around all the time, going into other classrooms, getting up and walking off in assembly. He got sent to the head of year today and they said it didn't bother him at all, there are no consequences for his actions, lately he seems to not care at all. His teacher is at the end of her tether with him and asked asked the SEN teacher to go back to 'observe' him in class on Thursday....last time she said he was fine and she had no concerns (despite putting some changes in place for him), I don't think the teacher will settle for that this time.

MummyMilla Mon 14-Jan-19 21:21:18

@password8180 sorry for the delay in replying to you.

I am so sorry that things have deteriorated for you - I was where you are (minus the soiling!) in November. It's utterly heartbreaking as you know, deep down, they are OK.

Yes, we managed to get the assessment appointment really quickly. Have you been to your GP? You need the school to be documenting everything and it's super important that the SENCO is able to put together a report. This helped get my son's diagnosis...much of it is based on the supporting paperwork TBH. We had a report from reception, and OT assessment report and the latest SENCO assessment. We also had the referral letter from the GP.

The actual appointment we had with the paediatric psychiatrist was a small amount of observation but she was mostly working off the paperwork from school and speaking to us. It helped that my son was bouncing off the walls for the time he WAS in with her though.

BTW, our assessment cost £900, although I'm not sure how much the follow up will be. Think £250. It's a lot of money, obviously. But we needed to do it to keep my son in school TBH as he was very close to be ing expelled! It's now looking like it may be OK...fingers crossed.

password8180 Tue 15-Jan-19 10:52:27

@MummyMilla

I have enquired to a couple of private psychiatrist but only one responded and said they would not see him till he is 6 (helpful, not!).

I have an appointment with a BUPA neurological paediatric specialist who seems to specialise in this area of work in just over 2 weeks so hopefully we can start to make some progress, although it will also depend on cost of ongoing appts. I also have an appt with his normal paediatrician. I haven't gone to the GP as I hope the paediatrician will be able to get things moving quicker.

I will ask school for a report. I know his teacher is really struggling, the SENCO 'observation' for 1 hour 2-3 months ago is being repeated this Thursday so we will see what happens. She just kept saying to me afterwards that it comes down to funding and the school don't have the funding that the nursery had available (he had 1:1 support most of the time he was at nursery). His neurologist put in her last letter that he may need EHCP so I will discuss this with the paediatrician when I see her.

I am so glad to hear that the medication seems to be working for your DS. How is it going now he has been on the medication for a little while?

Thank you so much for the advice and words of encouragement, it is much appreciated.

MummyMilla Tue 15-Jan-19 12:34:52

@password8180 he's been on meds for 2 weeks now and it really is wonderful. Basically the best version of my son. Not perfect - he's still a little nuts - but that's what we all love about him! Who wants perfect...?!?!

Someone has said that you can do your own EHCP if school are a bit rubbish. Is he at a state or private school? My son has recently moved to a private school and it's meant we're able to part fund a 1:1 with them. not ideal but good interim whilst we apply for EHCP - although if he carries on as in, I am not sure we'll need as much as previously. He's still very far behind compared to peers and we've got an educational psychologist assessing him next week to understand what we need to be doing there.

It's sounds like your BUPA appointment will really help get things moving. I know that it's exhausting, but maybe try some half days if school is really bad. He doesn't need to know it's a thing, but if feasible, it might be worth it to stop things escalating further. Pre xmas when things were at crisis for us, my son was clearly quite anxious (wasn't eating or sleeping properly) and some restorative time away really helped. We're now getting him back up to FT very slowly, so he's doing 8.20am - 1pm at the moment and over the term we're going to start building him up once meds are regulated.

Good luck x

password8180 Thu 17-Jan-19 08:48:27

Hi,

DS has another one hour observation today with SENCO teacher so we'll see how that goes. He was not on good form this morning and was on a red card again yesterday for stamping on books, when I asked him why he did it he said 'because they weren't mine'. When pushed further he said he wanted a boy to play with him, I am guessing the boy was playing with the books.

I think the trouble at school is causing him stress/anxiety as his tics (that have calmed down a lot over the last few months) are really coming back with a vengeance.

DS is at a state school. I will get the results of the observation hopefully at the end of next week (the SENCO is part time) so will see what that says. I will then ask for a meeting with the school to discuss the next steps and what we need to put in place. I also have the appts coming up at the end of the month with the specialists. I understand the school are asking the educational psychologist to review him but this was mentioned before and didn't happen.

Thanks smile

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