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Help me please - long but I really need help

(64 Posts)
HugAndRoll Thu 29-Aug-13 14:24:05

You may have seen my posts before I have ds1 with possible asd (going through testing) and ds2 with marked hyper mobility possible eds (going through diagnostic process).

Today I am very much struggling with ds1 and need help/to vent. I have had to put him on his bed and close the door as he is currently on meltdown 7 today and I've completely lost my patience.

Things that have caused issues today:

- breakfast was at the wrong time.
- at lunch I served my homemade bread. This was "the wrong bread" as it wasn't "the red bread" (braces white medium sliced).
- he couldn't complete a level on angry birds.
- the tablet ran out of battery.
- he had to come off the tablet (biggest one).
- I suggested going to the library to change his books.
- I asked him to go downstairs as he was in my bedroom.

I have lost my patience as at least some of that is typical 5yo behaviour which I need to tell him off for but OMG when I do he screams in my face, sometimes lashes out, slams doors, throws things around, kicks doors and walls and I just can't take it today.

He is worst for me and seems to hold it together more (but not entirely) for others. Others also have more patience than I (dm, mil, dsis etc) and I feel it's my fault this is happening.

What can I do? Posted here due to the possible asd and maybe me needing to take a different approach. Paed and SALT both say asd just waiting on September for ed psych referral to go in, classroom assessment by paed and for an OT appointment for his sensory issues.

PolterGoose Thu 29-Aug-13 15:35:11

Hi Hug I have a very similar ds, he's 10 now and has Aspergers and Sensory Processing Disorder. My ds is also very rigid and very reactive. He needs a strong structure to the day to be able to cope with life at all. When ds was younger we used visual timetables at home to mark set times for certain things, pretty much our whole days were structured around mealtimes.

We've had lots of meltdowns over the years for reasons very similar to those you've listed. I put a lot of effort in to pre-empt problems, before ds starts doing something I reiterate the rules and expectations, I used to use a giant 5 minute sand timer to help with providing warning of a change in activity etc. now he can tell the time it is easier. I also give choices where possible 'This bread or that bread for lunch?' not 'Which bread would you like?' So, giving a bit of choice and using as few words as possible. Sensory integration therapy stuff has helped him lots too as ds is very sensory defensive.

Ds's demand avoidance is much worse when he's anxious and at those times he needs much more structure and fewer demands, otherwise we trapped in a horrid cycle of demand > avoidance > bigger demand > angrier avoidance and so on.

It's hard, you're in a really tough place because until you can confidently say to others 'he has a diagnosis of X which means Y' you're stuck with people doubting you and thinking its your fault, I remember it well. Not saying people still don't think this, but I know it's not my parenting now (not that I'm perfect or anywhere close!) and the legitimisation of the diagnosis means I feel confident doing what ds needs rather than what might look like good parenting to others.

HugAndRoll Thu 29-Aug-13 15:41:48

Thank you for your response. I will look into getting a sand timer, I think it would help.

We have a visual timetable that I made but in the holidays I admit I've been lax about using it and as we don't yet have a dx, even though it was SALT that suggested it other key people who would need to do it with ds1 poo poo it and don't use it anyway.

I keep getting told by family and friends he can't have asd but they don't see the extent of his behaviours. Just hard as without a dx I just don't know if I am just a crap mum.

HugAndRoll Thu 29-Aug-13 15:42:37

Ps demand avoidance is a very good way of putting it. Everything is a battle even down to getting dressed/having meals etc.

coppertop Thu 29-Aug-13 15:58:43

"He is worst for me and seems to hold it together more (but not entirely) for others."

This is fairly common. Children often spend so much effort keeping it all in when they are around others, they get home where they feel safe and it all comes out in one big explosion. It absolutely doesn't mean that you're doing anything wrong.

"Others also have more patience than I (dm, mil, dsis etc)"

It's much easier to be patient when you're not dealing with things day in, day out. Again, it doesn't mean you're doing anything wrong.

"I keep getting told by family and friends he can't have asd but they don't see the extent of his behaviours."

Again a common one. My eldest was dx'ed nearly ten years ago, but there are still people who are convinced he's NT. Some people will say it through ignorance, some will have the head-in-the-sand mentality, and others will say it because they think it will make you feel better.

If you've managed to get this far in the summer holidays with even an ounce of sanity left, you've done brilliantly! smile

HugAndRoll Thu 29-Aug-13 16:07:12

Thank you. It's awful to say but I can't wait for him to go back to school. He needs the structure, he thrives on it.

PolterGoose Thu 29-Aug-13 16:09:25

Hug not awful to say at all, I'm counting down too, can't wait for next Wednesday when he goes back, I am exhausted and he needs school.

HugAndRoll Thu 29-Aug-13 17:07:56

Ds1 goes back on Tuesday. He's asked nearly every day since they broke up if he's going to school that day bless him.

I think the main issue is I need help with knowing how to handle and deal with him and I won't get that help (I assume) without a diagnosis which may not even come. If it doesn't I'm going to ask to go on a parenting course as I'm clearly doing a rubbish job.

PolterGoose Thu 29-Aug-13 17:42:00

The chances are you've tried all the stuff they teach on standard parenting courses. In my experience it is often once we've exhausted all the standard parenting techniques that we start to realise it isn't us, it is very much that our children need a different approach.

If he does have an ASD them it's worth remembering that his social and emotional development is probably around two thirds his chronological age, this helped me adjust my expectations. That doesn't mean not having expectations or having low expectations but recognising where your child is at and how you can encourage progress in an appropriate way.

HugAndRoll Thu 29-Aug-13 19:18:07

That would make a bit of sense as the meltdowns resemble 2/3yr old temper tantrums.

Thank you for taking the time to talk to me. I feel really out of my depth sometimes and it doesn't help I only have dh I can talk to honestly as everyone else minimises how I feel and how hard ds1 finds some everyday things.

PolterGoose Thu 29-Aug-13 19:43:05

It's okay, it gets easier (never easy though!) smile

DayBurner Thu 29-Aug-13 20:09:57

My sincere sympathies, Hug, but you're not alone as I'm in the same boat with my 3 year old.

Not much else to add that hasn't been said, but my DS loves the Time Tracker timer from (found it cheaper on Amazon!). You can program each colour of the "traffic light" and it lights up on it, then flashes before it moves on to the next one , so it gives a really visual countdown to help move children on.

I'm not really explaining this well but if you program the whole thing for 10 mins, you can have it on green for say 8 mins, the amber on for 1min 30 and then the red for 30 secs so it lets them know how much longer they have before something happens or before they have to do something different.

It is a bit complicated to set at first, but I really find it useful to motivate a slow eater: "Can you eat a mouthful before it goes amber?" and to let him know that "In 10 mins we're going out in the car," which reduces meltdowns.

Best wishes.

HugAndRoll Thu 29-Aug-13 20:45:32

day that sounds fab! I'm going to have an evening of research and coming up with a suitable timetable for the family to follow and how to implement it. I think if we are more structured (which doesn't come naturally to us) things may get better.

HugAndRoll Fri 30-Aug-13 16:14:18

Ds1 is asleep again after an epic 30 min meltdown. I recorded about 6 mins of it for his paed. I'm worn out myself and am tempted to ring the NAS helpline but without a diagnosis I can't really can I?

PolterGoose Fri 30-Aug-13 16:15:04

Yes of course you can.

Kleinzeit Fri 30-Aug-13 21:11:48

One of the things I got out of doing a “standard” parenting course while I was waiting for diagnosis was reassurance that no I wasn’t just a crap parent, and that whether he had an ASC or not (he did!) my DS really was a lot tougher to manage than your average kid. I also got a chance to talk about how things were, and some ideas which helped, and encouragement from the other parents as well. It does depend on the group though, some are nicer than others.

In case it’s any comfort smile DH and I used to watch “House of Tiny Tearaways” and sneer at the toddlers on it “You call that a tantrum? Come on kid, act like you mean it, give it some welly!” Though one child on HoTT did do a three hour non-stop tantrum, and my DS never quite managed that long.

It's very hard work and tiring and it's not always possible to stay on top of things, we're only human after all. I found the time before diagnosis was hardest. Try to remember to take care of yourself too, get some rest and a break sometimes if you can flowers

HugAndRoll Sat 31-Aug-13 05:17:35

Thank you, it's quite comforting knowing that others have felt the same way, although obviously I'm not "glad" you have.

I've been up with ds1 for well over 1hr already this morning properly and off and on since 2.30am. His already crap sleeping pattern is even worse now due to his meltdowns making him so exhausted he falls asleep during the day. I tried waking him up yesterday but couldn't and I'm paying for it now.

It also means we're stuck in a vicious cycle as he will be tired early and be more prone to a meltdown which means he'll fall asleep etc.

The upside is I'm watching dastardly and muttley with him as its one of the only child suitable things on at this time in the morning and he's finding the obvious slapstick comedy funny and is laughing at it which is (although a bit too loud as have a dh and ds2 still in bed) lovely.

I chickened out of ringing the line as I still feel like a fraud at the moment. I'm digitally recording everything (even if its just posting on here) so when we have an appointment I have newer examples of behaviours since I submitted the questionnaire thing.

PolterGoose Sat 31-Aug-13 07:48:52

Hi Hug

Lots of brew for you today

It's good he's been laughing at the TV (not so good he's been up for hours), we tend to buy DVDs of anything that has that effect because watching something funny is one of the only ways ds relaxes. We also don't restrict TV because of this.

Can you have a very easy day with him today? Stay home, watch TV, plenty of snacks, let him stay in his pyjamas, just remove any demands at all to break the cycle of tiredness/anxiety/meltdowns? Maybe agree a timetable for the day with him?

Have I already recommended 'The Explosive Child' book to you?

HugAndRoll Sat 31-Aug-13 09:24:08

No you haven't but I will get it out of the library. We have a nice late afternoon/evening planned which he is looking forward to. Other than that we will do very little. I feel bad for ds2 and the dog but at least until dh finishes work (hopefully only 4 hrs) l don't feel I can face the outside world.

Will see if I can get the explosive child on kindle cheap actually so I can start reading it now (ish).

coppertop Sat 31-Aug-13 14:39:55

I would try the helpline (or any others that you think will help). No-one is going to think of you as a fraud. Honest! smile

Keeping a record of everything is really useful. It's useful evidence for appointments, and sometimes it can show patterns and triggers for particular behaviours. So for me it showed things things like ds always being at his most hyper when he was tired.

The 'stay-home day' (as they're called in our house) are a positive thing for everyone. The parents get to do what they need to do without having to put up with on-lookers and planning four steps ahead all the time. The child benefits from avoiding the sensory overload from the outside world.

It's a win-win situation! smile

HugAndRoll Wed 04-Sep-13 23:42:14

Had his salt report through so did a copy if that and his paed report for school.

Sleep issues are awful now. I'm so bloody tired.

HugAndRoll Thu 05-Sep-13 02:31:01

Yet another broken sleep. Why does he wake up so much? He's properly awake too, takes a while to go back off.

HugAndRoll Thu 05-Sep-13 06:57:55

I don't know what time he got up this morning as my body must have given up after the 3rd time of getting up. He was already up for the day (sorted himself with what he wanted climbing on chairs where needed) when my alarm went off at 6.10. I can't cope with this and if I'm not waking every time am a bad mother.

PolterGoose Thu 05-Sep-13 08:15:32

(((hugs))) and lots of brew

Please see your GP/paed and see if medication might help, I know lots of dc's of MNSNers use melatonin, I wish I'd known about it when ds had sleep problems around the same age as your ds I think. Sleep deprivation is used as a form of torture and makes life very hard indeed sad

If he has his own room you could give him permission to get up and play quietly if he doesn't wake you, mine got better once he could read and I told him to read if he woke up, also did lots if work on what were important reasons for waking me and what weren't, we did a lots of work on working out generally how some things aren't as bad as they seem and what counts as an important problem (we used a visual and still refer to it now even though the visual is long lost).

Two things to consider: could he be hypermobile too? With hindsight I realised some of ds's wakings were pain related and he just needed a massage and a dose of Calpol before bed if he had been active that day; and, could it be sensory? he might be too little and not have the words or recognition to understand what is causing it? have you thought about trying a sleeping bag, we went back to GroBags (they go up to around 12yo size) for a while, but a normal sleeping bag might work.

How are you coping in the day? Do you go out to work or can you get a nap in the day? Have you got a dp/dh who is doing their share of getting up or taking over daytime stuff so you can rest? If you can find a way to make sure you get some rest you'll find it much easier to think about and try ways to deal with this.

HugAndRoll Thu 05-Sep-13 09:53:42

Thank you for your reply. I left a message with his paed's secretary about the sleep issues.

He has hyper mobile elbows for sure but is ok elsewhere (was thoroughly checked as ds2 (his little brother) may have eds hyper mobility and is markedly hyper mobile).

I've printed info from the NAS website re: sleep. I work tue to fri 8-5, dh works mon-sat 9-5 and he sleeps like a log so doesn't get up in the night. He also works more than me.

Dh did do dishes, Physio and a load of washing yesterday which helped but I do most of the housework as he works from home most evenings too.

Just exhausted and worried my work is going to suffer sad.

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