Can't cope with sons behaviour

[LittleRed34]

Anybody else just sit and cry when their kids are in bed because they can't cope with the aggressive behaviour anymore. My son is suspected ASD and non verbal. He's constantly headbutting me, kicking me, smacking me, and now makes a fist and punches me, pulling hair, biting. All sorts. He trashes the house, flips furniture. I've avoided even taking him out now because he wont walk, he will just drag his body, he will try and run into the road constantly, even walking across the road, he tries to sit down in the middle of the road. It's becoming quite an ordeal. No sense of danger. No empathy. Doesn't know/care he's hurting me all the time. I just don't know what to do anymore. I find his behaviour really triggering.

Ive certainly been there!!! More times than I'd care to admit! How old is he? Communication related frustration can be awful but things can get better over time.

He nearly four. I don't even know if it's just because he's struggling to communicate with me. He does it for all emotions. The aggression is unreal. He's a real sensory seeker too so I guess this plays a part. He's currently laid in his bed kicking the crap out of his walls. Real loud banging, he's doing it for no other reason then sensory. I just want to collapse and cry because I just cannot cope anymore.

Has anyone shown you how to respond when DS bites? Instinct is to pull away, but it helps and causes less damage or push into the bite. It doesn’t prevent all bites landing, but have you looked at bite sleeves?

For going out of the house, do you have an SN buggy or wheelchair &/or reins?

Has he had a home OT assessment to look at making the house safer for DS and better meet his needs?

Do you have lots of sensory equipment/toys?

What support is DS receiving? Does DS have an EHCP or has an EHCNA at least been requested? Does he have SALT and OT (including sensory OT) input?

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

Oh gosh. This is alot to take in but I'll try and answer as best I can.

DS attend nursery, we applied for an EHCP, it was refused on the basis that he doesn't have a diagnosis, (he's been on the GDA pathway for months now) and that he wasn't known to the LA, but he is because he has a worker come from the SEN inclusion service in my area, which is mostly for educational needs of what I understand)

He has regular appointment with SALT, not much they can do/willing to do, as DS says no words at all, he hasn't got enough understanding for cards, gestures, etc. so they just keep saying, let see how he goes.

We've been referred to orthotics because he tip toe walks at all times, there was talk of a referral being put in to the OT, for a special enclosed bed. Again, I've heard nothing.

We have loads and loads of sensory toys, things he likes, mostly lights and sounds, spinning toys etc, he loves water so we have lots of water play.

I do not have a buggy, he's too big and heavy for a normal pushchair now, I can't afford one of these special ones. He has a harness that goes round my wrist and then one on his and it's stretchy, but when we use it he flops his body on the floor and it's almost like I'm dragging him along, same with reins and when he's holding my hand.

We've had no social care assessments or anything, we do get middle rate DLA which I use for new shoes, new clothes, new mattress etc as he rips them to pieces or takes bites out of them.

I did contact my local healthy family team from health visitor and she said she was gonna make some calls and try and get me some support, a family worker who will come to the house and offer advice and support to me as a parent. It was suggested to me to call SS and explain how bad I'm struggling but I'm very dubious about this. I don't really know what else to do.

EHCPs are based on needs, not diagnosis. Not having a diagnosis is not a lawful reason for refusing. Neither is not being known to the LA. When did you get the refusal? If you still have the right of appeal, appeal. If you don’t have the right of appeal, request another EHCNA then appeal if refused.

The SALT DS is receiving sounds poor. Even if DS has little understanding, they can support him. Not just direct provision, but indirect. An EHCP can help secure more/better provision.

Chase referrals to OT. DS needs a home OT assessment, a sensory OT assessment and a ‘normal’ OT assessment.

Has DS seen a physio if he tip toe walks? If not, look at a referral to them. In some areas, you can self refer,

Have you looked at grants for an SN buggy? For example, Newlife, Caudwell Children, Boparan Trust, CrackerJack, Florence Nightingale Aid in Sickness Trust. There will be smaller local charities too but they can take some finding. You could also request a referral to wheelchair services. Again, in some areas, you can self refer.

You could look at SN reins such as Hobbledehoo. The harness has a handle on the back which can make it easier, but they still don’t work for all.

On their website, Contact has model letters you can use to request social care assessments. Don’t be dubious. DS is a Child in Need by virtue of his disability. Children’s Services involvement would be to support that. It isn’t a judgement of your parenting.

Thank you very much. We have an appointment next week for orthotics? It does say on the letter it's the physio therapy service so that's covered.

I can't appeal as it's been too long, I will request another one, I feel the nursery stitched me up on the last one as they spent alot of their section filling out the things he could do. Not the things he can't, I was very negative on my parts because I thought that would be the only way to get it done.

We've tried all kinds of harnesses and none seem to work, he's very strong and he just won't walk if he's harnessed up, he even has starting refusing to hold my hand, he wants to elope all the time, its so dangerous. I will look into one of these grants for a buggy, I applied to the family fund for a bed because he can't sleep in a normal bed, he won't stay in it and he is up all night trying to smash windows in, pulling curtains, pulling furniture over etc.

I'm exhausted.

Have a look at Newlife’s emergency equipment loans about a bed.

Im alarmed by what you have said about your salt. Having been in your position there are lots you can be doing that a good salt would be able to advise you on. Unfortunately nhs salt is woeful, if you can afford a private salt i would highly recommend it. A lot of your issues would become much more manageable if a good salt could help you put in a good visual alternative communication method.

We have had to adapt with ds's sensory needs. That bit is hard when things are being destroyed. He has a soft bed surround for his safety, no furniture in his room that isnt soft, all our curtains are velcro due to him pulling them. Hes 6ft 2 and has pulled lights out the ceiling. Its very hard but things can get easier.