Nearly 3 years in and I can't handle this existence any more

[Herecomestheninkynonk]

Please guys, you've been so good in the past. Please say something to get me through this.

DS nearly 3, complex medical & behavioural issues. He screams, hits me, pulls my hair, scratches my face for hours on end - been going on since noon today. As usual my face stings from the cuts, my scalp is sore and the bald patches are growing.

I have nowhere "safe" to put him other than his high chair where he has been screaming for over an hour, he won't stop now until he sleeps tonight.

I have 4-6 hours sleep a night cos he sleeps so bad despite medication. We spent months in NICU after his birth and people kept saying things will get better. They haven't. We can't go out as he gets so upset, friends/family are scared of his medical needs and behaviours so feel very alone.

We have all the professional help you can think of, but it's me sat here with the screaming child over and over. I don't recognise myself physically or mentally. I have no connection with the woman I was before he was born. My life is purely to help my husband care for DS. DH does so much but I still can't cope.

Really need some kind words. Can't see for the tears.

Oh gosh, how very difficult for you all. Have you sought help from your local authority, or checked out if there is a special needs nursery nearby? (you probably have, just musing on what would be available if you lived in this area)

I was going to say a safe space.

Somewhere full of cushions and soft toys where he can go to clam down [or not] but you will be safe and he wont come to any harm

Definitely look into an SN nursery or special school. In my area many special schools take children from before they are 3. Is he being assessed for a statement? If not start it now as he will likely need a special school or one to one in ms and he wont get it without a statement.

Can you get him in the buggy and just walk, for a break. Sometimes children calm down after a few minutes in the buggy. My Dd3 was nightmare to get in the buggy but once I started walking she did calm down.

Do you get a break at all through the week because that is really important.

Try to be kind to yourself and keep coming on here.

How awful for you - are social services involved? Maybe look at some respite care? Have you seen your GP about your well being? Counselling or the like so you have some sort of outlet. Are family able to help?

Sounds absolutely horrible for you both. Have a google of Pathological Demand Avoidance in case there's some ideas for a different approach there eg avoiding confrontation, adjusting your expectations, looking at his anxiety.
When my little boy was at his worst it was so hard not to hit back. Eventually I started doing zero tolerance for violence using restraint hugs. This is easiest while they're still small so you still have time to program him. We then simply stopped arguing with him about anything other than safety issues, stopped trying to do normal parenting or even normal ASD parenting. Looking at his meltdowns as panic attacks helped us forgive him and ourselves. He's much calmer now it's amazing.
I don't know what your DS's needs are but thought I'd share this approach as you seem to be at your wits' end! Hth.

Thank you,

Feeling a little guilty as the worst of my emotions have passed (for now).

Although no family locally, I have a couple of hours respite a week and DS has support from special needs nursery. All of the professionals who visit are very kind and sympathetic (there are a lot of them), but there is also a lot of head scratching and the word "complex"is used a lot. Then they go again and we're still here dealing with the same. I know I shouldn't complain, I get more than many/most but it's the constant behaviours that get me so low.

Managed to get DS in the buggy earlier, he did calm down after a while, then we got home and within 5 minutes he's scratched me, pulled out more hair so is back in his high chair.

Safe place would be ideal and has been discussed, but there doesn't seem to be any room here.

Thank you so much for your posts, feel I can battle on to the end of the day now. Will put my brave face back on now and go and raid the cupboards for chocolate.

Herecomes, I am sorry you're having such a hard time. Does your ds have a diagnosis yet?

DS has a genetic disorder and global delay, but the behaviour is non related and undiagnosed. Autism has been considered, but advised many of DS traits are very autistic others are the opposite. Sure I've outed ourselves to anyone who knows us! Hey ho!

Would there be room in his bedroom to install a safespace in place of his bed? They are ££££ but you could possibly source some funding for it?

You are doing a brave and wonderful thing, that requires incredible strength, for a little boy who needs you so much.

I don't know how the system works - but to me it sounds like you need some respite care. A couple of hours is not enough, with what you are dealing with. Can you apply for more! Demand more?
Hugs and a honk,
It sounds like you are doing an amazing job, in an incredibly difficult and demanding situation.

Just three thoughts:

• poor you, it sounds vvvvv hard

• please know that it gets easier - for me, 2 really was the worst age

• see if you can find an ABA tutor to help get his behaviour under control. My DS (autistic, hyosractive, learning difficulties) was aggressive at this age, plus hyper, and ABA was the only thing that helped. Even if you just pay someone for an hour's advice on how to tackle his behaviours, it was worth its weight in gold to me! Good luck.

Poor you sounds so hard :( is there homestart in your area? Look into it and see if they can give you a few hours help a week to takethe load of housework off your hands at least. And push for more respite as it sounds like you really need it x

A couple of hours is way too little respite in an entire week.

I know you say you are not coping but frankly you are amazing to have come this far.

Would a playpen work for short periods or is he too big now?

Have sensory issues been investigated? My dd was often disregulated and an NHS OT was really helpful for showing me ways of calming her (in our case swinging backwards and forwards for vestibular problems). She also liked small spaces as they made her feel safe, so we had a playpen with a pointy fabric roof (designed to be a playcastle). Calmed her right down. GP referred us for OT.

I know you say you have lots of support, but is there anyone who has an overview of things, e.g. a local parent advisor (maybe from your nearest SureStart centre) who could perhaps tell you if there's anything else you're eligible for? Or someone from your local disabled children's team or equivalent?

Any support groups locally for parents of children with special needs? If you can't get to meetings, they might pair you up with another parent for support/advice. Sometimes only other parents can truly understand how bad things can be.

Do you get DLA/Carer's Allowance? If not, this might help you buy in respite if you can't persuade them to give you any more.

Hope you get some help very soon.

OT funded a cot bed for my DS, which is basically floor to ceiling ask for their advice again. A safe space cosy fit was recommended but I would of had to of waited 6 months for the funding cycle to begin again where the cot bed was instant.

Cerebra has been great for us. They cover all sorts of conditions, so just the 'complex' but undiagnosed stuff you've described would put you in their remit I'd think, even if there's no specific neurological condition. They have local advisors I think - there's a website.

From what you say it seems that things are being held up by want of a diagnosis.
Rather than trying to address the issues surrounding the complexity of a diagnosis,look at the impact on you, the main career and your family and siblings. From that perspective there is clearly very considerable need that is not being addressed under the current arrangements.
From what you describe your position is desperate and yet you can not get the right buttons pressed to make things happen.

You have some respite yet clearly that is not enough. If you go down then it is likely that the family will implode.

Accordingly ask for an emergency re assessment from SSD on the grounds that the existing provision is clearly not keep you or the other family members safe. You should not have to face this level of pain from someone who you love so much.
Do not be put off by persons suggesting that the child would be taken from you. The chances of that happening are very remote and only after very significant failed intervention.
I hope these rather inadequate words go some way to helping you on a better path.

Nothing to add to excellent advice here. Just wanted to add a HONK and support for you . I too think you are amazing to have got this far on so little help.

So much good advice on here and nothing to add except hugs and a honk. I think when you're overwhelmed, it's best to focus on one thing at a time - from what you've said I would make that priority a safe space. Then you can move onto the next thing, which could be more respite. Hugs hugs hugs.

Have you had a Functional Behaviour Assessment (FBA) completed? could you qualify for Caudwell funding to get a Board Certified Behaviour Analyst in to do an FBA and then to write and train you in a behaviour support plan?

Again, thanks so much. DS in bed, DH and I have been discussing thread. Some of the wonderful things you've mentioned are well worth looking at, other ideas I may have disregarded before, but need to rethink as may work well now DS is older. Direct payments are on the horizon, but I want to look at the support we get and turn it into the support we need if that makes sense, including the safe space. Will ask for the help we need. Thanks to each and every one of you, sometimes the support of people who understand far outweighs that of your closest friends x

There are some books that are very good, available from amazon, one is called Functional Behaviour Assessment for Children with Autism I think and the follow up book is called 'Stop that seemingly senseless behaviour'. Although written for autism they could be used for many similar disabilities and are written for parents.

Nigel1 makes a great point. No SS wants to take dc into care if avoidable, but they all rely on our fear of asking for help, or they'd be swamped. Won't harm them if the odd extra person needs services though

Have you considered whether some sort of ABA programme could be a solution? It is good for addressing problem behaviours and you would have the support of other professionals who would be able to help you cope with his behaviour. I strongly believe that the only reason I've been able to keep my dd at home with me and without intervention from SS is that we ran a programme for her.

Hi herecomes,

Really feel for you, what you described was the beginning of our life too, all I can say is hang in there, what your feeling will pass. It will come and go in waves as the years goes on. Hopefully someone will be able to help and support soon.

xxxx

And are you also getting financial help OP? Are you getting the correct rate of DLA?