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Can't cope with DS anymore. Long one. Sorry

(32 Posts)
LuluLovesFruitcakes Wed 04-Jan-17 17:43:15

Wasn't sure where to post this - I have my own mental health problems and I honestly don't know if it's my mental health or my DS' problems that's the problem anymore?
I have ptsd, depression, anxiety, which causes insomnia and also have eating disorder which spikes every so often. Am on mirtazapine 30mg, the meds don't help anything except sleep and my mental health has been really bad and is getting worse. I have support for this from a MHSW and the GP.

My DS is almost 4 and has been assessed for ASD - he's due to have a reassessment in the coming months.
He has no fear. Not of consequences, not of danger, nothing. He'll intentionally do things he's been warned not to do because he either doesn't understand or care about the consequence. Same goes for things that are dangerous, he has no sense of real danger about lot of things. But then with other things he's overly afraid of things, he's a pain to get to cross the road because if there's a single car half a mile up the road, he panics that it's going to run him over ?hmm? Suddenly loads of things are scary when he never ever had a problem with them before.

He needs his routine. He hates change. If plans change or if his routine is altered it leads to a massive, inconsolable tantrum.
He is weird with his food - it's a push to get him to eat a hot dinner. Everything has to be cold. There are certain foods that I know he definitly will eat and alot of other stuff he won't even try.
He gets very fixated on one thing and nothing will distract him from that. Even if occupied with something else, he will keep coming back to that one fixation. To the point even if I've said no he will repeat and repeat and repeat himself in the hope that I'll give him a difference answer. I never give in.
He has zero concept of time. Today we were talking about what he would like for his birthday (next month) and he's decided that the delivery man is bringing his birthday presents today. And that's all I've heard all day. It doesn't even matter how many times I've explained that there is no man, he's still going on and on and on about the man coming with his presents. He literally does not listen to a single word I say.
He reacts very badly if told no.

He has sensory issues - being touched (brushing his hair is a nightmare & washing it is nearly impossible. As for cutting it? Forget it.) He really really loves lights, and is very sensitive to noise. Have bought him some can-headphones to act as ear defenders but will play music as he likes music, but very often in the house he'll just stand with his hands over his ears. He's very touchy-feely - he loves to feel things. He has one special teddy-dog and one blanket that are made of the same feeling material and he loves them. He often takes dog everywhere and can't sleep without him. He's very fixated with animals aswell - so am getting a pair of rats for us, as he'll be able to pet them under supervision.

He has absolutely no concept of others personal space.
And yet will kick off if someone gets too close too him.

He eats things that are not food. He bites things and chews on his clothes, teddies, toys, blankets, coats etc. Have bought him a chewy thing to wear round his neck.

He never sits still. He's on the go from the minute he wakes to the minute he goes to sleep. Am just thankful that he's usually quite easy to get to bed!!

The biggest problem is his lashing out.
I've been hit, punched, spat at, bitten, kicked, had toys thrown at me, been hit with toys, everything.
Today he was throwing toys in the living room, I asked him to stop throwing things, he carried on, I asked him to stop again and warned if he continued he'd be put for time-out in his room, he carried on and started screaming at me. So I took his arms to lift him out of the room, he went to bite my hand. In trying to stop him biting me, he caught the tips of my nails (they're acrylics still from christmas so otherwise the nails would've just broken off) and ripped my nails and fingers back leaving me with swollen, painful fingers - this was hours ago and I'm only just able to use those fingers now sad
After he's been violent I do tend to lose my rag with him and am probably too rough in putting him into his room.

I feel at my absolute wits end - I honestly can't cope anymore.
I literally go from wanting to smack him one back to crying in a heap on the floor to wanting to ring SS myself and getting them to remove him.
I'm a single mum, I have no family support around me bcs I had to flee DV and all my family are back in my hometown. My mother is difficult anyway and refuses to help me out with my DS. I've had Early Help for him, but they were useless and we don't have them anymore.

Sorry this is so long...if you made it this far, these are you for you wine flowers Think I just needed to get it out?

custardy Wed 04-Jan-17 17:52:12

Sounds pretty bad sad can you ask for respite care? As for the food thing, just give it him cold. Pick your battles.

LuluLovesFruitcakes Wed 04-Jan-17 18:09:24

I don't know if I could do that to him? He's so young... I left him with a girl I used to live with (refuge) once. Just dropped him off and didn't come back for 3 days... he was so clingy after.
He stayed with my friends partner on NYE because my friend wanted me and her to go out and he spent most of the night asking for me and asking when I was coming back and had a really unsettled night sad

I'm all he has. And he won't settle even if I am there because he's not in his own bed.

With the food thing I just tell him I'll cook it and he can leave it to go cold if he wants.

LuluLovesFruitcakes Wed 04-Jan-17 18:12:16

That probably sounds stupid after me saying that sometimes I don't want him here...!

PolterGoose Wed 04-Jan-17 18:14:28

Message withdrawn at poster's request.

PolterGoose Wed 04-Jan-17 18:16:37

Message withdrawn at poster's request.

LuluLovesFruitcakes Wed 04-Jan-17 18:21:25

I don't think I can get DLA for him, had a look before but don't think he meets the criteria?

I don't really know how much more I can take...with his stuff & my own issues...It's all much too much. And I get no help with him.

RebelRogue Wed 04-Jan-17 20:07:29

Oh OP i got tired and wincing just from reading that. flowersflowers
I have no real experience with SEN so can't offer a lot of advice,but i do hope someone comes ober with some wise words of support. It sounds relentless and it must be really hard and confusing when you are dealing with your own mental health as well.
Maybe you should at least enquire if respite care is an option and then decide if it's something you'd like to do.
You're not the first or the last to feel like that,and please remember that you need to look after yourself as well x

LuluLovesFruitcakes Wed 04-Jan-17 20:17:26

Thank you flowers

Forgot to add aswell that he's a pain to take out - if the bus is late or doesn't show (regular in my area) he kicks off. Sometimes I have to have a wrist strap on him or he runs. Sometimes he just refuses to walk completely.
He loves the water but I can't take him swimming, and certainly not on my own he's just so dangerous in the water.

I'm really unsure about respite care...I don't know how he'd react to it?
I know he would stay with a friend or relative if there was anyone who'd take him, and he'd be excited to go until he realised that I wasn't staying too?

PolterGoose Wed 04-Jan-17 21:14:36

Message withdrawn at poster's request.

venys Wed 04-Jan-17 22:01:53

I agree with pp definitely access SN support groups. Be it through the council or local charities. Most won't ask for a formal diagnosis. Try ringing contact a family for advice to start. Also try ringing the SEN department at your council to give you contact details of support groups and short breaks. And google disability charities near me. Around us we have a number of play schemes which might still require the parent to be there but it could be a safe place for the kids to run around and you might get a sit down and a cuppa. So at least it is something?

tartanterror Wed 04-Jan-17 22:02:35

That sounds tough!

Cerebra have a good guide on how to claim DLA for ASD kids. From what you have written he should meet the criteria!

Have you spoken to your LA's "Early Help" team? They can help you fill in the DLA and Short Breaks forms. There may well be different respite befriending services that you can access with those funds.

If you can afford it consider seeing a Human Givens therapist a couple of times. One helped me clear a trauma/emotional block in about 15 minutes, that I'd been stuck with for years. It might help you feel more able to care for your DS.

I found that the more secure my DS feels, the better he behaves. Once I started "quiet time" at bedtime (about age 6) , where we just chatted or played a quiet game/read a book or did something he wanted, behaviour at other times improved. It also helped me as then we weren't always battling and we both had some good times together. A lot of his troubles come from anxiety so I imagine I would be repaid with nightmare behaviour too if I left him with someone else for a few days.

I hope you can find some help soon.

knittingwithnettles Wed 04-Jan-17 23:06:57

I couldn't leave ds2 at that age either unless it was for a short time, 3 hours max.

Everything you say sounds very familiar; especially the impatience at queues/waiting for buses and the running off when fixated on something or stressed. Those things can be tackled by thinking out of the box, instead of trying to get him used to things, and not run off, just accept that he isn't safe in those situations and try and avoid or defuse as much as possible.

I would stick with buggy as long as possible, it is a safe space in pyschological not just physical sense. Five year olds can still stay in buggies, don't feel brow beaten.

DLA is a possiblity because from what you describe he needs far more supervision to stay safe than a NT 4 year old. It could pay for a buggy, or a person to come in and play with him in your house whilst you are still present.

Re: throwing, with hindsight the best thing is to find something he can throw safely rather than try and stop him throwing at all. Soft bean bags into a basket is an idea. Children can go through a "trajectory" stage where they learn by throwing things, you cannot really discipline them out of it.

Timeout is a overrated way of dealing with challenging behaviour, it often backfires and causes children to feel ashamed and angry and lash out further. It might be worth trying to distract him rather than tell him off when he is doing something very annoying. So if he throws water on the floor, you get a cloth and make a task (friendly rather than punitive) out him wiping it up, rather than getting angry. If he throws toys you make a game out of putting them all back in the shelves or boxes, so he begins to associate some natural consequence/responsibility with his actions. Rather than getting angry.

Sensory play can be an incredibly rewarding experience if you have a child with autism, so rather than see it as a drawback that he is very sensitive use to your advantage. Scented playdough, weighted blankets, tunnels to crawl through, different pieces of textured cloth, shells of different types, wooden toys, musical games, rhymes, dancing, bouncing on cushions or sofa cushions. The more you can enter into his world the less frustrating it will be looking after him.

Ds2 loved to run and climb so I went a lot to the playground and the bigger parks where he could just run and there was no traffic. The more time you spend outside in a green natural space the better. He won't care if it is muddy.

Out of Synch Child and Out of Sync Child has Fun are good books. Also, How to Talk So Kids Will Listen, which is valid for children with SNs even if it isn't directly aimed at them. Very thoughtful read.

Concentrate on the stuff he does enjoy rather than worrying about stuff he cannot do, or the fact that he might not behave quite like his NT peers, there will be moments that are priceless to you both. My happy memory is Ds2 jumping into a big pile of leaves as a toddler, and lying on the floor totally absorbed in his Brio train set. We used to build a Brio train set every morning, that was ds2's routine. He was also very attached to his soft toys and had names for them all.

Try to think of his lashing out as anxiety rather than violent attacks. I blame the way we feel so judged for our children's behaviour, that we spend so much time trying to change their behaviour. They aren't developmentally ready to change, to eat stuff they find the wrong texture, to sit still to wait patiently to obey our seemingly reasonably instructions, and then they get anxious because they know we are cross. And it becomes a battle. But it doesn;t need to be.

knittingwithnettles Wed 04-Jan-17 23:19:03

Some children with autism can be hypermobile, so their joints hurt, which can be a reason they don't like walking long distances, whilst seemingly fully of energy in other ways! But they cannot tell you that is the reason. It can also mean when you get home, they are suffering from pain, and they kick off or won't settle at bedtime rather than appear calmer.

I think when a child repeatedly hits or lashes out at you you get so stressed that it is difficult to think through any strategies, you are just on high alert all the time. Would it help to just keep remembering he is reacting to something that is has triggered him, your tone of voice, frustration at not being able to do something he wants to do, disgust at something, fear that you are leaving him? He is not trying to hit YOU, he is trying to stop whatever it is that is bothering him from happening, or just releasing adrenalin, (fight or flight response) Trying to teach him not to behave in this way, won't work, unless you remove the stressor or the trigger, the brain doesn't unlearn stress, unless there is a completely new positive pattern at work. One day my ds started eating red and green peppers because at nursery he learnt they were "traffic lights". Previously he wouldn't touch them..that's the sort of positive association that makes children change their reaction to things.

LuluLovesFruitcakes Thu 05-Jan-17 08:38:01

Gosh so many replies...bear with me.

Pram - I've had to throw it out a long time ago, he's much too big for it. (106cm & 18.5kg) and he hated being in it - he always wanted to walk. Now the only way I'd be able to get him in a pram due to his size would have to be a specially reinforced one to accommodate his size, he's huge for a 4yo.

He's getting a tablet from a relative for his birthday, so hopefully that will help some.

We did have Early Help - they have me a sticker chart (he's not remotely interested in), a "now and next" board but I need to buy some cards for it as the majority of ones we were given aren't applicable, and it's missing alot of usual things like breakfast, lunch, dinner, bedtime, book etc. And she's given me a recipe for edible playdoh and told me to play with him more.

He has a trampoline in the garden, we live in a flat so alot of indoor-things have to be quite quiet and try not to bang on the floor too much. I let him jump on his bed now that it's winter and we don't get out in the garden.
And he's got an underwater light for bathtime coming. He absolutely loves being in the bath, especially if the waters different colours and there's loads of bubbles etc.

Alot of things that have been listed I have tried with him - have painted his ceiling dark and tried to make his bedroom very calming and sensory-friendly with glow-in-the-dark stars on the ceiling (because if he's having a particularly bad day sitting in a darkroom with the stars calms him, he has a fibre optic light aswell which he loves.
But he can't be left alone with it because he just trashes them so I have to always remove things from his reach.

He has a twizzle, headphones, a chew necklace and his wrist strap in a backpack for when we go out, to try and pre-empt and stave off any problems while waiting for things. I usually try to put snacks in there too.

Sometimes he does want to hurt me - if he's lashed out he gets put to his room to calm down (and give us both some space for a moment) and when I get him out I say to him "Why did mummy put you in here"
DS "Because I hit you"
Me "Why did you hit mummy"
DS "I wanted to/ to hurt you"
Me "How do you think that makes mummy feel"...and then we talk about how it feels to be hit and hurt by someone and that he wouldn't like it if someone hurt him. And then we carry on as normal.

He's back at nursery this afternoon - so that's going to be fun! - which also explains some of his more challenging behaviour this past week or so bcs he's been off since the 19th Dec.But I can have a look at some of things you've all suggested when he's out later.

But sometimes he just seems so normal, like a badly behaved kid with a pretty rubbish mum - a product of his environment.
And other times he's absolutely fine and lovely?

LuluLovesFruitcakes Thu 05-Jan-17 08:40:08

Oh and the food thing - he never used to eat anything red until he went to nursery. He eats alot better thanks to the nursery.
They also say they never have a problem with him and that he's absolutely a NT child. Since his first assessment they've gone out of their way to tell me how wonderful and perfectly normal and just like every other child he is.

Ineedmorepatience Thu 05-Jan-17 09:32:36

Thats really unhelpful of the nursery if they know you are having a tough time!

2 nurseries that my kids went to claimed to not have any problems with them until after they left! I never understood why they couldnt have just been honest!

What is he like when you pick him up? Is he overwhelmed? Angry? Some children are able to hold it together at nursery/school but then explode at home, lots of professionals are finally beginning to recognise this.

Try to keep a diary of the things he struggles with and how you manage it! That can help as evidence for assessments.

Good luck flowers

LuluLovesFruitcakes Thu 05-Jan-17 11:13:31

I know what you mean - it makes no sense to me at all! Surely it's better if parents & nursery/school teachers are all reading from the same page?

I didn't even know they use now & next with him until Early Help spoke to them. And apparently they allow DS to set his own if they ask him to do something (eg put his toys away) he says "2 minutes" and they go "okay - 2 minutes".

Usually he's quite ratty because he's tired - he does 12-5pm. And it takes a bit to get him to get his coat & woolies on to leave, he doesn't want to cooperate, and then asks to be carried most of the way home. Nursery really knackers him out.

knittingwithnettles Thu 05-Jan-17 14:04:27

I don't think four year olds actually know why they do things. Often they repeat phrases back to us that we have used, it seems simpler for them mto think up ideas of their own. I don't think he wants to hurt you, he is just repeating what you have told him previously, that he HAS hurt you. It is not much point asking them questions about their behaviour. A bit like saying why did you run off...because I wanted to - it doesn't really tell us much about WHY he wanted to. No doubt he wants to release anger, but that is different from wanting to actually HURT you. Or he might want to get a reaction, but again that is not because he wants you to physically suffer. I would beware of putting things into children's heads that they are not pyschologically capable of processing. If he doesn't know his birthday is next month, why would he know why he wants to hit you??

My ds2 behaved beautifully at nursery. A bit repetitive in his play. He still ended up with a diagnosis of HFA at 7. It was a good place for him, and a nurturing place. Your son IS lovely and "fine" but he might still need special treatment at home, according to his profile... I don't think it is that nursery are managing him better, just that you are the most important person in the world to him and the person he will act out to, and express his real emotions, whatever they might be.

Fwiw, it sounds as if you are doing so many lovely things with him that nurture and support him too, just that you are not confident that somehow his behaviour (which in many ways is 3 year old behaviour, just that he is now 4) isn't your fault. But it isn't. Children of that age are utterly exhausting and demanding, let alone ones with extra needs. But kids are very sensitive to adults too, and he will be picking up on the fact that you feel overwhelmed, and might express this in all sorts of ways..It is a nightmare chicken and egg situation you get with small children, the more stressed you are, the more stressed and demanding they seem to get, because they are like little sea anenomes responding to vibes..sad

knittingwithnettles Thu 05-Jan-17 14:13:06

Also, have you realised you ARE coping? You are coping brilliantly. I wouldn't want you to think otherwise. You written about so many things that only a mother who was "coping" would manage to even consider. The calm bedroom, the snacks in the backpack, the twizzle, the headphones, the chewy necklace, the lights. Most people don't even THINK to do these things, they just vent about their child's behaviour - you are being incredibly proactive already.

PolterGoose Thu 05-Jan-17 15:00:27

Message withdrawn at poster's request.

PolterGoose Thu 05-Jan-17 15:03:21

Message withdrawn at poster's request.

Ineedmorepatience Thu 05-Jan-17 15:26:00

I agree with nettles too. Everyday you get through is a success!! Keep going your are doing great 💐

Hellenbach Thu 05-Jan-17 15:36:48

You are definitely eligible for DLA. This guide will show you how to fill in the form for a child like yours (no awareness of danger, behaviour issues etc)

Your son is entitled to 15 hours free childcare at either a registered childminder or nursery.

Do you have a local children's centre? They will be able to support you with behaviour management.

Go back to Early Start and ask for more support, they have let you down.

A social worker will support you both, with applying for benefits and help for your son. They won't take him away.

bumbletoes Thu 05-Jan-17 19:37:08

Regarding nursery - when my DS was in nursery and Reception I was having very similar problems to yours but staff at nursery and his teachers at infant school said he was fine, just a bit quirky sometimes. When I arranged a meeting with the SENCO at school she suggested I didn't take him out enough and he needed socialising! I explained how we did take him to places - a wide variety - but that his behaviour was always unpredictable and he would just run round in circles.
I am a teacher myself and it often happens that I tell a parent how well behaved their child is and they don't believe me. (It can work the other way round too; often children who are problematic at school are fine at home). The well behaved child bottles in their stress all day and then, come three thirty or whenever they get home and it is 'safe' they let it all out. My DS can be a nightmare after school (he is now nearly 9) and he needs a long time to calm down.

Those who know about ASD know that behaviour can vary so will believe you. I have been told that if my DS (or one of my own students) can't cope at home after school then it is a sign they actually aren't really coping at school and they need some time out to help get the stress levels down.

Sorry this is long. It is just that I had to go through the GP to get a diagnosis as my DS's teachers were saying he was fine. This won't be a consolation, but as my DS has got older and school has placed more demands on him, his bad behaviour at home became bad behaviour at school so everyone understood and I had no need to prove anything. He is in junior school now and, though every day is a struggle of some kind, the staff have been amazing.

You are doing a great job. I know how hard it can be and how isolating it can be, but you are supporting your DS really well. I hope you are able to get further support for the two of you.

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