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Coping stratergies , I feel like running

(34 Posts)
crazydrunkevilhamster Sun 16-Jun-13 15:42:27

I'm new to the SN boards so hiya blush

Ds 4.5 has suspected ASD/ADHD/OCD sad

I need some short term coping stratergies , as I keep losing it & its not doing either of us any good , he has pushed me to the edge this weekend & im struggling to think how im going to cope for the rest of the day, it doesn't help that I've not slept all weekend & nor has Ds <not that it bothers him>

magso Sun 16-Jun-13 23:14:21

Banana, theoretically a diagnosis is not needed to get DLA, as it's supposed to be needs based. However I think it is easier for the assessors to understand need once a DX is in place. So I would say go for it now, but maybe take your time to fill the form in accurately. It can be hard to be realistic because we naturally try to underplay our children's difficulties.

I think mothers of ADHD kids are by necessity hard asses grin My mother was tough as nails but even she's in awe of how strict I am, it's not a choice I make willingly but if people thinking I'm a hard nosed bitch keeps my son from getting himself killed I don't care.

Totally agree about never making threats you won't follow through, ds1 needs to know I'm serious and as he cant read people's mood or emotions all he has to go on is what I've done before.

Ineedmorepatience Sun 16-Jun-13 21:56:38


I am not the best person to advise because I havent filled one in.

I think you should do it straight away but before you do go on the cerebra website and order or download the guide to the DLA form. It is invaluable apparently for getting all the right info onto the form.

I have got one of the guides and am planning to do the form over the summer [yeah right] grin

Ineedmorepatience Sun 16-Jun-13 21:52:10

summer I am loving controlled chaos grin

I agree about consequences, Dd3 is the same. I have to say if you dont do x you wont get y. Not if you do x you will get y. It just doesnt work for her. I also never threaten anything i am not prepared to carry out and I always carry out any threat I issue.

I am a mean nasty mummygrinwink but she is safe and is making great progress smile

Ineed... Ds1 is like that. I use a sharp, positive command first, 'walk', 'come back', 'stop' (I feel like a dog walker some days!) and then hold him still and force eye contact to give him the reason.

It's hit and miss tbh but he is starting to grasp the reasons better and will often spout them back to me now. He's a slightly more controlled chaos than he was 2 years ago grin

I have a knack for death grip handholding which has saved him more than once too, he can't shake me off yet, although as he getsbigger it's getting harder without injuring myself, he'll scratch and twist to get free. Hence why I'm working on getting him to understand consequences and develope some impulse control as physically restraining him is harder now. He doesn't learn from experience, he's covered in bruises and cuts all the time and still repeats the same behaviours, so we try and find ways of communicating danger to him that he can retain. For ds1 that's with blunt, harsh, accurate descriptions.

Consequences work better than rewards for him, but they have to be swift and immediate and he has to be able to undo them equally quickly with good behaviour. Goals, long term punishments and stepped rewards don't work. If we're out and he wont stay by my side that means immediate repercussions such as being held or losing an item he has on him. If he can earn his freedom/item back straight away it works, if the punishment is indefinite he loses interest and his behaviour deteriorates.

Ineedmorepatience Sun 16-Jun-13 21:31:22

Just glad to be able to offer some support crazy, I was in a bad place like you when I first came here.

The folks on here helped me to get a diagnosis for my Dd3 and gave me the encouragment I needed to get her into a better school.

We still have some tough times but nothing like when she was little, I still come on here though because everyone gets it smile

bananananacoconuts Sun 16-Jun-13 21:28:28

Thank the Lord once again for MNSN!
I am having the exact same problem with ds and this year,6-7 has been the toughest so far! Great to know we are not alone and are able to have a grumble! Can i just hijack quickly to ask a quick question?
Have to do it the long way round here so filled in a caf form, had 2 meetings (next in july) and doing parent nurturing course plus frs coming round once a week as of friday. Can i ask when would be a good time to apply for dla? Nowhere near a diagnosis but frs lady has said she'd write a recommendation for a trial of melatonin from gp as i haven't had a full nights sleep since ds was born!!! Do i need to wait til we've seen a paed or couldi apply now on the basis of no sleep? Ds has suspected adhd/aspergers/ocd

crazydrunkevilhamster Sun 16-Jun-13 21:27:02

So much info blush thanks everybody

I will have a proper read through it all tomorrow x

Ineedmorepatience Sun 16-Jun-13 21:10:59

Yay booby I had forgotten about the stopping game!

I used to play it with Dd3, she used to stop like a statue, then run for a little bit then when I shouted "Stop" she would do a statue again.

It definitely helped her to get the idea of stopping. I think she was nearer 6 when she got it properly though.

magso Sun 16-Jun-13 21:09:40

Hello crazyhampster and welcome. MNSN has been a lifeline for me.

I found 4-5 very challenging (and wanted to do a runner too!). I think it might have been a combination of ds wanting to do just exactly what he thought of (right that second) and not having the experience or ability yet to predict what will happen or wait, plus the huge social changes in starting nursery and school where children who are not average are out of step with their peers and have a harder time. He learnt differently to others so standard parenting did not work well.

The point is it does get better.

Life slowly improved once he had a diagnosis and I and school could better understand the way he thinks - or doesn't. Also Ds got better skills with time. For instance because he could not predict what would happen he would do silly or dangerous things without deliberate intent. He took a long time to realise that what did not hurt him could hurt another. He had poor understanding of others emotions (shrieks of delight and pain sounding and looking alike to him) so would seemingly do things deliberately to upset others then get distraught once he realised he was in trouble.

A trampoline with a net around worked wonders!

Strategy wise I am not sure how to help as what worked for my ds (dxed later with ASD ADHD and LD)might be different for yours. I attended several specific parenting courses (I was desperate) of which the Webster Stratton was among the most helpful - mainly because I was with other parents struggling with children who needed specialist parenting skills too, and we helped each other. I nearly walked out at first though! I sort of picked what helped for us. The paediatrician or the local children's centre may be able to help find support or a course - although you may need to wait till a diagnosis is at least on the horizon so that the strategies are suitable and specific. Support groups can be helpful in the future.

Ds (nonverbal at 4) needed very simple positive commands such as stand still. He would often hear only one word or the last word so needed positive commands like 'walk' or 'stop' rather than no running. Ds had trouble with transitions so needed warnings. I used songs (with a different tune for going home to going out) and hand signals to help him understand time.

Being tired and worn down makes everything so hard.

Ineedmorepatience Sun 16-Jun-13 21:07:07

What!! Even if you are desperate crazy!! That is bonkers. I think you should ring them and tell them you are absolutely desperate and tell them how many hours sleep you are getting.

Actually even better email them, that way you are starting a paper trail [well you are if you print the email]. Also go to your GP and tell them the same. My Dd1 was prescribed a drug to help her sleep by my GP without the consultant being involved.

Do you get any family support??

If you are in England you should have a sure start or childrens centre somewhere near you. Go and see them and tell them you need help. At the very least they will help you with any paperwork such as DLA forms. You should apply for DLA, it is based on need not on diagnosis and with his awful sleep you would probably get it.

boobybum Sun 16-Jun-13 21:06:21

Hello, another vote for a trampoline as it really helps burn off some energy. You mentioned your DS has a grass allergy so would a trampoline tent help at all? Or even one of those mini trampolines for indoors?
As for parks we have a list of parks that are properly enclosed so we don't have to worry about our DS running off and also try to go early before the masses descend upon them.
Or how about a bike? We have a regular bike for our son but have attached a parent handle so that we can keep hold of it (he can ride at a fair old pace so we get a great workout running along with him!)
We have also recently bought a cement mixing tray that builders use (sometimes called a TuffSpot) which he likes to sit in with a container full of lentils! The TuffSpot basically contains most of the mess and he will happily play with the lentils, pouring them, burying trains in them etc for quite a while. You can do all sorts of messy play in the tray.
As for the running off, I think it is something which should improve with time. We still have to hold our son's hand almost all the time but he will now stop (momentarily) when we ask him to. We always praise him when he is walking nicely with us and even give him the occasional sweet for doing so and if he does stop when asked he gets tons of praise.
Could you practise getting your DS to stop on demand in your garden? Make it a sort of game, so first get him to run and then shout stop and reward him when he does (you may well need someone else there when you start this to physically prompt him to stop until he gets the idea).

crazydrunkevilhamster Sun 16-Jun-13 20:41:27

I don't see a pediatrician again until September & they won't see me any earlier than that

bassingtonffrench Sun 16-Jun-13 20:37:35

sympathy. get to a paediatrician and beg for drugs to help him sleep. We used drugs for a short time and it really took the edge off it and seemed to get him into a better pattern overall.

on a better nights sleep everything else seemed copeable with.

crazydrunkevilhamster Sun 16-Jun-13 20:14:28

Their is NO reasoning with my Ds , even bribery doesn't work hmm

As for explaining the consequences of running in to the road etc he just doesn't get it no matter how blunt I am with him .
He is a thrill seeker , I took him to the fair the other week & we ended up spending 2 hours on the Waltzers & he would quite happily still be sat on them now hmm grin

Ineedmorepatience Sun 16-Jun-13 19:56:38

It doesnt sound harsh if it could save his life summer

it would be too much language for Dd3 though she would have switched of after " I... you run..." So I am more the sergeant major type, I would say "STAND STILL" or "DONT MOVE" in a very clear firm voice.

Dd3 has gone the opposite way now and she never moves from me and is usually dangling on me hmm

You just cant wingrin

It does get better, I promise. Ds1 was a runner too, still can be but he's slowly developing some self control. I still lose him on a regular basis, was paying for shopping yesterday and he vanished but he doesn't go as far now. He seems to have grasped the concept of staying in the same building at least hmm

He's almost 7 and I'm starting to be able to reason with him. He's logic based (the ASD showing through the ADHD) and I've found being quite blunt can work. Rather than 'don't run off' I'll say 'i you run across the road a car could hit you and it would hurt, it could kill you'.... Sounds harsh but he seems to retain stuff better if I'm quite graphic about the consequences.

WaitingIsWhatIDo Sun 16-Jun-13 19:48:24

For me the running off/ meltdowns etc were the worst. I have all the patience in the world for learning difficulties and communication difficulties but the behavioural aspects were terrifying. I think I am still 'damaged' in a way, things are improving but it will be a ong time before I feel 'safer' in situations where he could run.

WaitingIsWhatIDo Sun 16-Jun-13 19:45:39

Is it also because of their delayed development, so really they are as difficult as an 18 month old but in the body of a 4 year old and being expected to cope in typical 4 year old situations?

crazydrunkevilhamster Sun 16-Jun-13 19:44:08

Thanks INMP

Ineedmorepatience Sun 16-Jun-13 19:41:19

I think it could be because they are trying to develop their independence. They know what they want to do and just go for it, they are unable to consider the consquences of their actions and often dont want to respond to "no or stop"

Dd3 finally stopped running off when she was around 6 although it took me a lot longer to trust her.

We use lots of visual stuff to help with rules.

It is exhausting, I hope you manage to get your trampoline crazy, ours is great for Dd3 to burn off excess energy.

Good lucksmile

needadvice1000 Sun 16-Jun-13 19:22:49

Why is 3.5 to 4.5 the difficult part... someone else mentioned this too (we are just at this stage) and that tantrums changed for them age 5-6 but I was just wondering why/how etc.

WaitingIsWhatIDo Sun 16-Jun-13 18:21:42

tigersmummy don't feel bad, I couldn't see it either til my son was nearly 5 and then it took another 9 months for diagnosis. Keep moving forward :-). OP this may not be much help but I can honestly say 3.5 to 4.5 was like hell on earth and I had visions of it always being ht way. Son s just 6 and things are much much better, still challenging but not totally hellish.

crazydrunkevilhamster Sun 16-Jun-13 17:55:41

We are hoping to get him a trampoline this summer as I have a huge garden , the only thing is though Ds has a grass allergy which brings him out in an immediate rash which causes him to panic .
Oh n he can't stand dirt/bugs so its pretty much a no go area for him


armani Sun 16-Jun-13 17:51:43

Do you have a garden op? My dd has suspected adhd, amongst other things, and we have just bought her a trampoline with enclosure. I can honestly say its been the best thing we have ever bought her. Today she has been on there for about 4 hours and it generally tires her out. We zip her in the enclosure so she can't fall off and she does somersaults, head stands etc. in fact she is still out there on it now and I really should be bathing her!
I know how hard work it is, somedays I have felt like I can't cope any more. Good luck x

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