Suspected ADHD…please help ;(

[Pickle2828]

Hi, I’m looking for any help/support/advice which you can offer if you have had an ADHD boy who presented from a young age. My son is 4 years old and we are at breaking point.

We are awaiting an appointment to get the ball rolling on a diagnosis but as I have ADHD (diagnosed and medicated as an adult) and my son has alway exhibited common behaviours I am pretty sure he is the same. My daughter and husband do not have ADHD.

We get a lots of dopamine seeking behaviour which is often intentionally irritating others to get a reaction, fussiness with foods, other sensory issues, extreme distractability and time blindness completing daily tasks despite being very able, ‘contrary’ personality - very defiant which feels very disrespectful…the list goes on.
Family life if just so difficult and any time I ask for help or advice from my mum (the parent that never saw my adhd) she tells me it’s because boys just have more energy and I need to be stricter and tire him out more. He’s on the go 24/7 and we are firm with expectations, we use time-outs, we have timers for mealtimes and give sanctions (when he is disrespectful or hurts other) to attempt to manage his behaviour so I think I’m just being gaslit here.
His behaviour is getting more and more extreme and difficult to manage. A year ago we were saying oh maybe he’ll settle down when he starts nursery and now he’s starting school and it’s harder than ever. It didn’t get better. He’s better in an educational setting than he is at home but I know that’s common.

I love him with all my heart and feel so much empathy for him when he’s finding things difficult himself. He is the most creative, loving, affectionate and funny boy. The problem is much of his behaviour is so upsetting for the rest of us we just need to find some strategies that will help reduce this and make home life better for us all.

Please hit me whatever you’ve got…strategies, parenting books, advice, comforting words.
Whatever may help we are open to. TIA <3

For sensory behaviour, you may find this booklet, this website and the book The Out of Sync Child helpful. Do you have sensory equipment? Some find a trampoline and/or punch bag useful. Does DS get a lot of exercise and tasks that provide sensory input such as ‘heavy’ lifting/tight cuddles?

The food issues may well be sensory related. Some find food chaining works. Have a look at ARFID.

Lots of areas don’t commission sensory OT anymore, but if your ICB does, it is worth a referral.

For time blindness, some find a sand timer or countdown clock helps (alongside giving one task at a time and constant reminders).

Some find The Explosive Child book or Yvonne Newbold’s resources helpful.

You don’t mention ASD, but the signs can overlap. It may be worth looking at some PDA strategies and the Declarative Language Handbook.

Have you spoken to the school? What support are they going to provide? Has an EHCNA requested?

Thank you @EndlessLight for your reply.
I will read up on the links you shared.
He is generally very physical in the way he goes about things - climbing on furniture around the house, won’t sit through a meal, rolling around on floor, attempting gymnastics, jumping on beds etc. we encourage him to go outside on the climbing frame/swings but isn’t always keen and wants someone to play with him which isn’t always practical. We don’t have any specific sensory equipment- perhaps we should get some as he sometimes misuses things and causes damage.
I’ve not heard of food chaining or AFRID so I will look into these.
We have countdown timers (he likes them to be visual and gets angry if I do it verbally) and constant reminders are in our daily ‘toolkit’ and definitely help. We’ve managed to get mealtimes from 90+ minutes and still not finished down to 30 minutes and always eaten at least half using timers , reminders and rewards which has been a game changer.
We have both ASD and ADHD on my side of the family but I think most of his behaviour is more ADHD. He can sometimes be very shy around new people and doesn’t like being looked at/ feeling observed by unknown people, will growl or use a strange growly voice. He can read facial expressions, show empathy and has been successful in making friends at nursery (because he’s fun and is a bit of a nutter). But worth checking out too. I tick ASD boxes too but didn’t peruse diagnosis.

PDA came to mind for me too but I was told by someone (maybe incorrectly?) that it can’t be PDA if it’s not all the time because it’s pathological. He’s far more compliant at nursery or with a childminder than he is at home. He can’t bear to just do as he’s been told- he always has to bargain, or have something different (even if he actually would have chosen what’s been suggested), or will agree but on some kind of proviso - it’s utterly exhausting and very obstructive to getting things done.
We spoke to the nursery last (academic) year and they were happy to support a referral but couldn’t because the nursery was in a different LA to our home address/Drs Surgery. We start at a new school nearby next week. I don’t know what their SEND support is like but I haven’t told the teacher as I was worried he might be labelled before he’s had a chance to make his own impression. I really worry about how some adults perceive the ADHD label and find it (personally) quite stigmatising in certain groups as some people have preconceived ideas. I’ve told the teacher that he feels things very strongly and how important it is for him to feel ‘heard’. I told her that he has a lot of his own ideas and is very motivated by these but is often disinterested in tasks he is asked to do. If she’s experienced she will have already got an idea from that I would have thought.
Once he’s settled and she has seen how he is in the new setting I will speak with her to find out how he’s getting on and ask for support for us as a family. Emotional regulation is most needed but it’s so hard. (I mean I find it hard as an ADHD adult- my moods and reactions are ridiculous and embarrassing at times. So trying to regulate as a 4 year old is even harder). I think he will be okay at school in reception because they have a lot of time where they can choose but I can see him finding things harder once learning because more formal (less choice and lots of time sensitive tasks) by Y2 and I want to get ahead of that for him.
Sorry-I’ve just seen how long my reply was. Thanks for your message though :)

I really think you need to request a meeting with the SENCO. And request an EHCNA yourself using the model letter on IPSEA’s website. Sadly, in most schools, parents need to push to get support. The school could support emotional regulation with something like Zones of Regulation.

Can you look at some sensory equipment for inside? For example, a mini indoor trampoline, steamroller, southpaw’s sensory kit you attach to the doorframe or a gorilla gym kit that does the same.

DC can have demand avoidance without having the PDA profile (in the UK PDA is mostly not diagnosed. Rather ASD is diagnosed and sometimes the report will say ‘with PDA profile). Demand avoidance doesn’t have to be there all the time. Even if it is PDA, the demand avoidance varies due to lots of factors such as the environment, anxiety, people… Some DC with PDA can still sometimes mask too (and then fall apart/explode later). Whether DS has ADHD, ASD, PDA or none, it sounds like PDA strategies may help.