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To be a bit fed up with the lack of actual helpful 'advice' from the disability team?

(19 Posts)
extremepie Sun 24-Aug-14 15:47:58

My youngest son is 6 and has borderline severe ASD. He is mostly non verbal and has no sense of danger and we have a SN pushchair for him to help keep him safe when out of the house.

For the past few months he had been engaging in 'self injurious' behaviours like banging his head on hard surfaces and biting or scratching himself. I mentioned to our SW that I was concerned about the fact that these instances are getting more frequent and I'm worried how we will manage in the future as he gets bigger/stronger so she refered me to a disability specialist person (can't remember the exact title!) who came over the talk me through some techniques I can use to stop him doing it.

Trouble is, she sat down and played me a DVD which basically said either distract him or physically put myself between his head and the hard object or hold him so can't bite/scratch himself until he stops.

Maybe useful advice for some but not very for me & ds, he always does this in response to not getting his own way so when he's doing it he's too wound up to be distracted and the blocking only works until I move then he carries on!

Aibu to be frustrated that the specialist can't really give me any other advice than this? I've told them it doesn't work and they haven't given me any other advice! What am I supposed to do when we are out and he's hitting his head against the pushchair and I can't block or distract him? Aibu to just want some advice that actually helps?!

I appriciate that it is difficult to give advice that works for 100% of people but I'm really worried this will get worse if they don't help me and not sure what to do about it!

CarmineRose1978 Sun 24-Aug-14 15:56:28

Firstly, no, YANBU... it's there job to be creative in their solutions, I think, not just say, "This works for some people" then shrug if it won't work for you.

Disclaimer: I have no experience with children with SN, so not sure is would be appropriate, but I have seen kids with epilepsy wearing padded hats/helmets to protect them when they have a seizure. Would one of those help when you're out and about, do you think? Or would it make it worse because he'd hate it? Sorry not to be much use. thanks

CarmineRose1978 Sun 24-Aug-14 15:57:19

*their job, I mean.

extremepie Sun 24-Aug-14 16:03:24

My mum actually did suggest one of those but it's a bit awkward trying to get him to put it on when he's kicking off, unless he wears it all the time but then it seems silly to make him wear it always in case he tries to bash his head! Not sure what the solution is :/

You're right though, it's their job to help me manage his behaviours so I can keep him safe, recently he was doing it in the car against the window so hard I thought he might break the glass sad I can't drive at the moment but stuff like that scares me, I think how will I cope if I'm driving and he does that? I can't block or distract him then!

CarmineRose1978 Sun 24-Aug-14 16:06:03

It's very scary and they aren't being helpful at all... I do see what you mean about not wanting him to wear a helmet all the time just in case, but it might be worth it to prevent head injury, if he will wear it. Does he like watching rugby at all? My DP just mentioned that you can get rugby type helmets for kids to play in, which might also do the job, and that might make him feel better about wearing it?

Lifesalemon Sun 24-Aug-14 16:07:27

I have a child with complex needs although different needs to yours so I'm afraid i cant offer any advice on the issues you are facing but i have found the most useful advice comes from other parents who have dealt with the same things you are going through and made it out the other side. Hopefully someone in this situation will post, otherwise maybe a support group for parents of children with similar problems could be helpful. Good luck.

CarmineRose1978 Sun 24-Aug-14 16:09:03

If you post in the Special Needs section of the forum, I bet someone there would have some good ideas...

blanklook Sun 24-Aug-14 16:16:45

A padded helmet was my first thought as well, as long as he would tolerate wearing it. Also padding the part of the pushchair he bangs his head on, maybe try a padded seatbelt cover in the first instance? e.g.

For scratch prevention, obv keep his nails as short as possible - easier said than done I know - and now it's not so warm give him clothes with fitted long sleeves that are hard to push up if he will tolerate them and maybe wear gloves in some situations.

extremepie Sun 24-Aug-14 16:18:09

That's very true Life I'm sure other parents would probably have a better understanding of what really works! I'm in a rural area with no friends and no transport so meeting other parents with the same issues is difficult but maybe I should try online groups if there are any?

It's funny actually, the last group I did go to in June was with 4 other couples and I was giving them advice! It felt great to be able to help other people but their children were a bit less severe than ds2, with different issues and no self harm :/ Lovely people though!

Carmine unfortunately ds has no interest in any kind of sport really, he doesn't particularly like wearing his bike helmet but I can always try a different design and see if it helps smile

I really worry that he will seriously injure himself if he gets bigger and stronger, want to nip it in the bud before that happens sad

fairgame Sun 24-Aug-14 16:30:59

These 'experts' are usually pretty useless ime. My son is 9 and has asd and has a habit of running off. The expert's solution was to give him a card saying 'stop' which was of course no bloody use to me, how am I meant to give it to him when he's already run off!
Other parents are usually the best source of advice.

deakymom Sun 24-Aug-14 16:31:41

what does he not like? i saw a lady stuff netting behind her sons head once (think tutu netting the stiff scratchy kind) when he began whipping his head off the back of his sn pushchair stopped him cold he hates the stuff!

deakymom Sun 24-Aug-14 16:36:38

yes i love the stop sign i was told to show my 18 month old a stop sign to prevent him from getting out the front door i said (slowly in case they were having difficulty) he can't actually read

my actual issue was when people left/came into the house he legged it like a mad thing in a nappy

there next suggestion was we keep the door locked i began to ask if we should exit via the window but dh stopped me grin

extremepie Sun 24-Aug-14 17:16:19

Deaky ds is also an escape risk, we have the doors and windows locked at all times unless someone is coming or going :D

Slutbucket Sun 24-Aug-14 19:02:47

What situations is he not getting his own way? Has anyone mentioned an ABC chart to you?

extremepie Sun 24-Aug-14 19:07:04

For example, if we go into a shop and he wants crisps/chocolate and I say no, head bang.
His food is taking too long in a restaurant and he doesn't want to wait, head bang.
Or if he wants to watch toy story for the 5000th time and his brother is watching something else so I say no, head banging etc!

Basically when he can't have what he wants :D

Debs75 Sun 24-Aug-14 19:24:02

OP You are describing my own ds to a tee when he was 6.
He once headbutted a quarry stone tiled floor because we had to leave a friends house. He has run away several times and often would just dash out the door. You get pretty used to locking all doors wherever you are.

Re the shop thing we were told to offer him something before he goes in to keep him occupied. Do you do big shops with him? For several years we couldn't go into Asda as ds was petrified. We stopped taking him shopping at all.
When we decided he had to get used to some shopping, i.e. shoe, clothe shopping we started in stages. In Clarks we went to the desk and told them he has severe autism, he needs new shoes but he can't do waiting and will get distressed. The staff were great, serving us straightaway and even let us come in with a happy meal so he could get new shoes and be less distressed. Later they moved away from McDonalds so we could get away with his favourite starburst.
In supermarkets he still got distressed and would panic so we did a max of 5 things on a list for him. He often would steal fruit and his disability worker said an apple is a small price to pay for a quick and easy shop without him having a major meltdown.

extremepie Sun 24-Aug-14 19:32:38

Debs, that sounds very familiar!

I do occasionally do shops with him but I tend to go on my own when they are at school or shop online as he can get very stressed but if we do have to go with him I take the iPad or phone and he has special headphones to wear and listen to music which usually keeps him happy but some days he's just not in a good mood and will head bang over anything and everything!

The iPad/music combo does usually work but sometimes he just can't be distracted and is determined to bang his head and scream no matter what I just wish there was something that consistently worker every time! wishful thinking

insanityscratching Sun 24-Aug-14 19:36:48

Yes it isn't great that you aren't getting the advice you need to help your son. We had the support of a child psychologist when ds was diagnosed at three with autism and extreme challenging behaviour, learning difficulties etc and rather than giving me solutions to certain behaviours she gave me insight as to why he was behaving in that way in that situation. This was invaluable as to be honest you will never have the support of someone advising you on behaviour strategies around the clock and so you do have to be able to address behaviours as they happen.
In terms of head banging I'd be looking at what precedes this and what could be done to avoid the trigger. So you say it's when he doesn't get his own way, can you give him more preparation so that he is more reconciled to complying with your requests? could you remove from view something he wants but can't have? Can his desire be used as an incentive or reward in some way?
Having doors and windows locked and a high garden fence and constant supervision seems to be part and parcel of having a child with autism I think. I used to keep the key on a chain around my neck but it does soon become second nature to make sure all spaces are secure.
Fairgame a way to address the running off is to teach him a game where he learns to stand stock still at the shout of a word. Ds's used to be triangle (he had a shape obsession) yes you look a wally shouting triangle but it worked. So play the "triangle" game in the garden, reward every single time with something he values sweets, chocolate, marbles whatever floats his boat.Do this consistently until it becomes second nature for him to stop at the word.
Once he's secure in that work on him coming back. Ds didn't understand for a long time that shouting him to come meant that he had to walk to me and so using someone as a guide we'd start small perhaps only a step away, I'd shout "ds come" and his guide would bring him and I'd reward. Slowly build up the distance rewarding all the way. Once he's secure in coming to you with a guide start small again and teach him he will be rewarded for coming to you.
It's time consuming but it's a valuable skill for your child to learn. Schools can support you in this by playing the "triangle" game in school and also practising the come here prompt because it's a good thing for all children to do.

BlackeyedSusan Sun 24-Aug-14 20:21:09

the best advice I can give is ask on the special needs board. this is where I have got the best advice.

ds used to head bang. it was scary. it must be really difficult for you. ds hits himself still.

itis not difficult to think up the restrain or distract techniques. mostr parents would have tried that. not helpful that they can come up with nothing more than that.

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