We can’t live like this

[Cakeyface123]

I’m so unhappy. DS7 has ASD/PDA and ADHD. Everything is a battle. He is angry, explosive, demanding. He has extreme anxiety. He’s very hard to be around. Not in school. Not toilet trained. Won’t bath/shower. Needs contact attention, reassurance. We have no life. How our marriage is surviving I don’t know. It’s a miserable existence. I want to pack a bag and run away.

Can’t get him to take meds (Atomoxetine). I’m having to give up work now and the future feels bleak. This is not how I imagined my life would be.
I feel guilty for saying this. I love him dearly. But I can’t live like this. I just don’t know what to do 😟

Has anyone been here and made it out the other side? Any positive stories. Anything ….to give me a glimmer of hope that things will get better?

Does DS have an EHCP? Does it include SALT, OT, MH therapies? If DS isn’t in school have you asked for an early review? If he doesn’t have an EHCP you should apply. The LA should also be providing alternative provision.

Have you had social care assessments? A carer’s assessment for you and an assessment by the disabled child’s team for DS.

If DS isn’t already under them ask for a referral to the continence service.

Can you hide the medication in something else?

If you haven’t already Yvonne Newbold’s resources are good. Also look at the PDA society’s resources and Ross Greene’s The Explosive Child book.

Thank you for responding with some suggestions. Yes he has an EHCP but he won’t engage with any of it. A school has been named but a place isn’t available until sept 23. He is under SALT and CAMHs and has had OT assessments etc (OT don’t keep a caseload in our area). Professionals never seem overly concerned about him still wearing nappies - most just say he’ll do it when he’s ready (he’s fully able to - it’s just the anxiety/refusal part he can’t get past).

Waiting for Early Help support (although we’ve already been down this route previously and nothing was done or offered to help so I’m not optimistic)

The meds taste so bitter and leaves an awful aftertaste. DS struggles even to take calpol. He doesn’t eat enough in a big enough quantity to be able to hide in food (enough to hide the taste or get the full dose down him)

My priorities at the moment are bathing, nails and hair (cut or wash - I’d be happy with either). And bedtime - last night was gone midnight when he went to sleep (in my bed). Can’t remember when he last had a bath, possibly 6 months ago.

Im exhausted and there are just so many issues to deal with but I’m mentally depleted. Struggling to face each day 😔

It is probably can’t engage rather than won’t and the provision needs adapting so he can engage. For example, do you have a budget for resources, equipment, sensory equipment, subscription boxes? Would DS engage with something like Mindjam? What else does DS enjoy doing e.g. if he would go climbing you can get that funded?

Is the school wholly independent? If not, it must admit now, not having a place isn’t a legal reason to not admit if they are named in section I.

If the OT is specified and quantified in section F it must be provided regardless of what normally happens in your area. If it isn’t being provided you can enforce it. If the provision isn’t specified and quantified in F you need to pursue this via an early review, along with some kind of MH therapy, probably an indirect therapy based on whatever DS likes doing.

Rather than Early Help you need to formally request social care assessments under Section 17 of the Children Act 1989 and the CAFA 2014.

Can you try a different brand or type of meds? Or would DS take tablets - some find it easy from a sensory PoV? If not and you are at crisis point I would slowly syringe the medication in the gap between DS’s back molars and gum. If you do it right it can’t be spat out. Sometimes needs must and DS won’t rationally be able to see the meds are in their best interest. Last resort but we have had to do this with DS1. Melatonin might be easier to hide too.


For DS’s eating have you considered ARFID?

I know some people cut their DC’s hair and nails when DC are asleep. Wouldn’t work with my DC but does for some.

Wow he needs to be in school for all your sakes. Was he previously in a mainstream school? If so you should have refused to take him out until they found a new place for him, it is totally unfair that he is not getting a suitable education and you are left trying to cope.

I would complain to the LEA, complain and complain and complain. Find the legal information on what SEN children are entitled to, what education children are entitled to and tell them you want to know what they are going to do about it. Councils have to provide enough school places for the children living in the area and they need to find a space for him.

PS If they're still not interested then I would seek legal advice (and let them know you are doing so).

Even if DS was in MS he wouldn’t be able to continue attending the MS if there is another school named in section I. The school in I must admit. If they won’t they can be directed to.

Thank you both. My brain is mush today and tonight. I will regroup and re-read properly tomorrow. Thank you for your ideas and suggestions x

@Cakeyface123 hi, sorry you’re struggling, can I ask, why won’t ds take atomoxetine? Is it tablet or liquid form?

Ds takes atomoxetine but liquid form, he refuses to take it from the syringe, he has it in orange juice, takes it fine every morning after a long struggle to get him to accept medications ( we used to have to crush his old meds up and lace his drinks without his knowledge) but I wanted him to accept it and be fully aware he was taking it so worked for months and months to get him to understand and accept me putting in his drink. Deffo ask for liquid forms, ds couldn’t tolerate a tablet, would never be able to swallow it.

He also has sertraline liquid in juice for his anxiety. (Neither can he tasted, he would deffo say so)

Life is still hard, but it’s so much easier than the previous years we’ve had, he’s been on both of these meds now for 9 months, he goes to special school, in year 4 and for the first time (since September) is attending full time (no school, even his special school would have him full time due to his horrendous behaviours, he’s always done 2 or 3 hours a day, drove me mental for years)

Does he take sleep meds? Ds takes 2 a night. You need to get these prescribed for your ds sleep.

@Cakeyface123
hi, sorry you’re struggling, can I ask, why won’t ds take atomoxetine? Is it tablet or liquid form?

Ds takes atomoxetine but liquid form, he refuses to take it from the syringe, he has it in orange juice, takes it fine every morning after a long struggle to get him to accept medications ( we used to have to crush his old meds up and lace his drinks without his knowledge) but I wanted him to accept it and be fully aware he was taking it so worked for months and months to get him to understand and accept me putting in his drink. Deffo ask for liquid forms, ds couldn’t tolerate a tablet, would never be able to swallow it.

He also has sertraline liquid in juice for his anxiety. (Neither can he tasted, he would deffo say so)

Life is still hard, but it’s so much easier than the previous years we’ve had, he’s been on both of these meds now for 9 months, he goes to special school, in year 4 and for the first time (since September) is attending full time (no school, even his special school would have him full time due to his horrendous behaviours, he’s always done 2 or 3 hours a day, drove me mental for years)

Does he take sleep meds? Ds takes 2 a night. You need to get these prescribed for your ds sleep.

@Cakeyface123
hi, sorry you’re struggling, can I ask, why won’t ds take atomoxetine? Is it tablet or liquid form?

Ds takes atomoxetine but liquid form, he refuses to take it from the syringe, he has it in orange juice, takes it fine every morning after a long struggle to get him to accept medications ( we used to have to crush his old meds up and lace his drinks without his knowledge) but I wanted him to accept it and be fully aware he was taking it so worked for months and months to get him to understand and accept me putting in his drink. Deffo ask for liquid forms, ds couldn’t tolerate a tablet, would never be able to swallow it.

He also has sertraline liquid in juice for his anxiety. (Neither can he tasted, he would deffo say so)

Life is still hard, but it’s so much easier than the previous years we’ve had, he’s been on both of these meds now for 9 months, he goes to special school, in year 4 and for the first time (since September) is attending full time (no school, even his special school would have him full time due to his horrendous behaviours, he’s always done 2 or 3 hours a day, drove me mental for years)

Does he take sleep meds? Ds takes 2 a night. You need to get these prescribed for your ds sleep.

@Cakeyface123
hi, sorry you’re struggling, can I ask, why won’t ds take atomoxetine? Is it tablet or liquid form?

Ds takes atomoxetine but liquid form, he refuses to take it from the syringe, he has it in orange juice, takes it fine every morning after a long struggle to get him to accept medications ( we used to have to crush his old meds up and lace his drinks without his knowledge) but I wanted him to accept it and be fully aware he was taking it so worked for months and months to get him to understand and accept me putting in his drink. Deffo ask for liquid forms, ds couldn’t tolerate a tablet, would never be able to swallow it.

He also has sertraline liquid in juice for his anxiety. (Neither can he tasted, he would deffo say so)

Life is still hard, but it’s so much easier than the previous years we’ve had, he’s been on both of these meds now for 9 months, he goes to special school, in year 4 and for the first time (since September) is attending full time (no school, even his special school would have him full time due to his horrendous behaviours, he’s always done 2 or 3 hours a day, drove me mental for years)

Does he take sleep meds? Ds takes 2 a night. You need to get these prescribed for your ds sleep.

Sorry my post repeated multiple times, there was a glitch with mumsnet last night.

Anyway think I made my point. Lol

All the issues you faced, we did too.

nails and haircuts, ds had NEVER tolerated any of these, he had shoulder length hair (I used to tie it up in a man bun) and his nails I use to cut one a night in his sleep not to wake him, by the time I got round all his fingers and toes it was nearly time to start the process again. 😳

Toileting, he was weeing on the toilet since age 5 but he was terrified of having a Pooh so still used nappies for these (he’s 9) again since medication and his anxiety reducing we’ve worked on poohing on the toilet and we’ve cracked it now.

Since he’s been on his medication, he’s let me cut all his fingernails and his toe nails, and he’s been going to the hairdresser every 4 weeks since august for a cut (no shavers) he has a proper little hair cut now and looks tidy. 7 years of refusal for it all (proper refusal) and we’ve single handily sorted it all in the space of being on medications, that’s no co incidence!

Please persevere with the medications, it will make all the difference to yours and ds life.

Thank you! This is just what I needed to hear. A glimmer of hope that it won’t always be this bad.
Yes the atomoxetine it liquid. Ok …I’m determined. I’m gonna give it another go and <try> to have a conversation with him about it and see if he will agree to it in a bit of orange juice each morning. The consultant doesn’t want to prescribe meds for anxiety yet …until he’s had behaviour therapy. He did mention Risperidone tho (which is an anti psychotic) but it does treat anxiety too. He said he felt DS was a bit young for this just yet but in the clinic letter it says in future he will likely need further meds. The thought of DS going to school feels a million miles away. I’d be happy with much smaller wins right now.
thank you again xx

DS1 takes risperidone, he started taking it at 6y/o. We were in crisis on the verge of an inpatient admission and medications are what prevented that. Not a miracle cure, but definitely worth it.

@Cakeyface123 i put it in normal orange squash with water, the liquid is really bitter like the tablet so give it a good mix and plenty of squash and he’ll not taste it, ds doesnt.

It took a good 3 months for that to start to work with ds, just small changes but noticeable.

I would also request something for his anxiety, now. Tell them to sod off with waiting. Atomoxetine can help with anxiety on it’s own, but if he has bad anxiety then he’ll need something additional in my opinion. Again the sertraline (needs to be made into a liquid so request it to be prescribed as liquid, CAMHS do it for us no problem) can go into squash aswell.

At the end of the day how can you work on behaviour management if he’s too anxious to comply? They bore the shit out of me when they peddle that crap. Easy for them to say sat behind their desks when they aren’t the ones ready to give their child to social services because you physically can’t cope another day. (!)

Pointless exercise trying to teach them anything when they aren’t in the correct place, medicate first then the rest slowly falls in to place.

You mention he’s awake until midnight, does he have any sleep medication? Melatonin on its own wasn’t enough for ds, he has phenergan prescribed and takes both together,

You can buy phenergan from boots pharmacy, (liquid form) you can tell the chemist it’s for allergies (but says on the box to be used for insomnia with dosing instructions) you could give that a try in the meantime while you get something prescribed.

Op - hope you are ok and today is a better day 🤞 it's really really hard

I've got a pda boy too as it's soooo hard.

What's helped

• Eliza fricker podcasts and she is on missing the mark too - she keeps me sane - listen to them they are fab - you can have her on in the background it's free - she on Facebook / Instagram look her up

Baths - any skin conditions? The soap making his skin itch? Or maybe just a plain water bath. What helped what a disco ball in the bath and regular pop bottles with holes spiked in them and funnels to play with the water. You can put glow sticks in the bath too.

Will he leave the house? Even if you walk to the corner shop for a bar of chocolate for fresh air. Or even walk to mc d . One thing that my boy loves is bike riding - do you think your son would like it if he's able to go out

Would your boy take a pill? Intuniv (non stim) works for us. Half a size of a tic tac then there is no taste.

Mindjam that's good - get yourself on the waiting list if he likes computers

Does he have any brothers / sisters

Noise cancelling head phones - if the siblings are noisy

It's really hard - keep ringing the drs - the ones that shout the loudest get the help ....

Do your claim dla / carers - if not apply

Sleep - get that through cahms defo ring them up for that today - say your in crisis and need sleep don't be fobbed off with the receptionist . You can buy it online but takes a while to come

Therapy for yourself - look into getting a counsellor just to off load ....

Hope today is a better day

Also negotiate with your boy - it seems to help us rather than telling him - like we do need a bath but I'll let u decide when you want it - am or pm .... but everything with my boy is negotiations ....

All else fails wine and chocolate to give you something you enjoy ..... that was in hope to make you smile but seriously you need something too 💐💐💐

Also, which county you in? I've got a fab what's app group loads of pda mummies - they keep me sane if you are in the same area - you could join our group 🤩

@Cakeyface123 I have no advice as I too am in the same situation but my DS is older (13). He is out of school, has an EHCP but he can’t engage with any support. He is also ASD and PDA.

It is awful to watch him struggle so much. Truly heartbreaking. On a selfish (human) level, it is soul destroying to be so utterly fed up of dealing with the struggles day in and day out. DS has not left the house in a month and as he can’t be left alone, neither can I. It’s extremely tough on the whole family.

Yep @danni0509 you’ve hit the nail on the head there about his inability to engage with camhs - I’ve said exactly the same. He needs something to lower his anxiety to enable him to learn the strategies. His adhd isn’t the main issue at all so I’m not sure why they’re medicating this. I did ask and he just said that about him ‘learning’ behaviour techniques first. Given how extreme his fears and anxieties are, I don’t think behaviour therapy is going to scratch the surface.

Hes not in melatonin, but it has been suggested. The consultant did say the atomoxetine might help with sleep though

@Ilovechoc12 I’m in the UK (Manchester). Thanks for messaging. Supper is lacking, lots of ASD groups ….but I really feel like the PDA aspect is so significant that I don’t always feel we belong in the ASD community (that’s a bit weird I know)
Yes he has an older brother. dS7 is such hard work though that they only interact in small bursts tbh
me - yep recently got some antidepressants and counselling. Trying really hard to get myself in a better frame of mind. My mental state isn’t helping the situation at all. But it’s impossible to be happy when we’re living like this.
yes he gets DLA too
the drink comment did make me smile and yes ….it certainly does help! (G&T for me!)

@CaughtInATrapeze big hugs. There are so many of struggling aren’t there. Makes me feel less alone so I appreciate you taking the time to message x

‘Support’ is lacking ...not supper 🙈 although speaking of supper 😋

I'm 150 miles from you - although I did live in manc for 5 years for my degree

Yes pda is completely different

I always say to my husband if I "only had ASD" my life would be easy!!!! I could deal with a ASD child - pda is a different challenge totally

Pda is soul destroying ..... when the child is in an unhappy position ( I know u will know what I mean by that)

People and environment is the only thing that I focus on - if those 2 things work things are a bit easier. If those 2 things are not working you are absolutely busted in life. Totally F

I do think though medicines are wonderful as it can be soooooo hard without - my son is better on ADHDs meds. I hated the thought of medicines but then I thought wtf we can't do any more and meds have improved life for everyone .... he's been tried on many many meds ....

Unless you have experienced pda (in the general community of people) you have absolutely NO idea WTF is happening ..... including family members they are so clueless beyond clueless !!!! Always mummy knows best 🥰🥰🥰🥰 and you are doing amazing 🤩🤩🤩🤩

Hope you manage to have some special time with your other son. He needs that time too with you as his mummy - hope you manage to get a hr with him on a w/e just enjoying each other's company.

That's what we have issues with family balance ....., but we divide massively and separate

Maybe try and find someone private - it's not ideal but equally cahms doesn't do much ..... sometimes in desperate measures trying to get the support maybe try if possible .... everything nhs is supper over stretched it's crazy. So maybe it's worth paying for

Do you have some friends local or has the pda made it isolating?

Hope you are ok - it's really really hard. 💐💐💐💐 xxx

Rather than paying for private MH provision it can included it the EHCP so if the NHS can’t or won’t provide it the LA must commission independent provision.