Can I have a moan about ds2? :(

[coppertop]

Can I just have a self-pitying moan about ds2?

I'm trying to look on the bright side and can see how much his language has improved over the last couple of months. His play skills are also improving a little and he is finally starting to become a little more tolerant of wearing clothes. Everything else seems to be going downhill fast though.

He had an IDP meeting recently and I was asked to bring him along. He went into a complete meltdown (a mixture of a change in routine and a sensory overload) and gave a full demonstration of his difficulties. In a way I was quite pleased about this as he'd been quite happy and co-operative during his CDC assessment and I was starting to worry that they might think I was somehow making it up or exaggerating. I think the headbanging was probably the last straw and so we all moved to a different room where there was a sensory area for ds2 to use. He calmed down almost immediately and was giggling in minutes.

The visual timetables have helped with leaving the house minus the screams but when we actually get to where we are going it is a nightmare. Ds2 wants everything to be done in a certain way and wants to always travel via the same route - and I just can't do that every single time. His behaviour is so awful that I now avoid going out with him wherever possible. At weekends dh takes ds1 with him to do the shopping while I stay at home with ds2.

At home he is also a disaster waiting to happen. His fine motor skills are far more advanced than they should be, and combined with his intelligence it is downright dangerous. He can manipulate the window locks, the cupboard locks and the fridge lock. I have to leave the toilet/bathroom door unlocked when ds1 is at home but this means that ds2 can get in there too. He can climb up to about 5ft-6ft off the ground using whatever he can find to get himself up there. The aftermath of a bottle of bubblebath poured down the toilet was like something out of a really bad comedy.

I shouldn't really complain as we do get a lot of help from portage, SALT, OT etc. It just all seems really cr@ppy right now.

[HappyHuggy]

hi coppertop,

i dont know anything about your sons condition and because of that dont have any good advice. i just wanted to bump this up for you til someone comes along who cab help

take care

love huggy

xxx

[tamum]

Coppertop, I'm so sorry. You are usually so upbeat I can see you are very down about this. Did your ds1 improve from when he was ds2's age or did I imagine that? Might it be a case of riding the storm for now and hoping for improvement in a year or two, or is that just wildly optimistic?

Are we allowed to give you a hug or are you with Davros?

Tentative {{{{}}}}

[macwoozy]

I wish I had bags of advice for you, as you're always giving out so much advice and help to others. All I can say is that when my ds was your ds2's age I also had this type of behaviour to endure and god did it get me down, but it did get easier and I just hope for you that in time things will get better too. I really do

[KarenThirl]

Lots of sympathy to you Coppertop. It's very worrying when things seem to be getting worse - it makes you wonder where it will all end. I've really felt as though I'm losing J over the past couple of weeks - it's horrible to be so out of control. It must be exhausting for you to have two to follow around.

Do you really believe things are worsening, or is it just a particularly bad day?

Sending warm fuzzies.

[coppertop]

Thanks.

I suppose I know/hope deep down that it will get a little better as he gets older. He's been going through the 'terrible twos' pretty much since his 1st birthday. Ds1 was difficult at this age but in a completely different way. Ds1 was far more 'distant' at this age IYKWIM. If left alone he would wander round in a world of his own. His fine motor skills were delayed too (although we didn't know that at the time ) which made it much more difficult for him to get up to much mischief. Ds2 is far more active. Not quite clinically hyperactive IYSWIM but definitely at the higher end of the scale. Ds2 is basically a 2yr-old with the mind of a 4yr-old and the climbing abilities of a 6yr-old with the language comprehension of a 10mth-old. The combination is pretty lethal. I'm hoping that things will even out a little as he gets older.

I think it's probably just me going through a bad patch as much as anything. When I read through the notes I've been making since ds2's assessment I can see that he's come a long way since then. It just seems as though while I'm busy trying to sort out one set of problems more issues seem to be appearing. Two moths ago it wasn't too difficult to take him out. He was more difficult than the average toddler but was at least manageable. Now I can't face even simple walks to the shops with him unless a lot of planning goes into it.

We have an appointment with the Paed later this month but I'm not all that hopeful that anything will come of it tbh. He's good at his job but he seems to have a bit of an obsession with ds2 going to bed at 7pm and getting more sleep. On those miraculous and rare nights that ds2 is asleep by 10pm he wakes up extra early so doesn't actually get any more sleep. The idea of him being asleep at 7pm is just laughable really. Last night he was asleep at 9pm and I was overjoyed - only to be woken up this morning by ds1 telling me that ds2 had got downstairs. I don't know if ds2 got the stairgate open (ds1 still can't unlock it) or if dh had left it open last night but it looked as though the place had been ransacked. There in the middle of it all sat ds2 eating the last of 6 (yes SIX!) yoghurts. He'd got them out and opened them himself. Aaarrggghhh! I'm sure I will see the funny side of it tomorrow.......

I'm rambling now.......

[gaelsgirl]

hugs for you ct

[Davros]

Oh dear CT, sorry to hear how tough things are, esp with the horror of going out and having to split up .
I didn't have to put up much with the route rituals, don't know why tbh, that must be so hard and bloody tedious!
I DO know about the advanced motor skills coupled with very much lower cognitive and language skills. This has been the main reason we didn't go on holiday, SAFETY! We had to do a lot of ad-hoc adaptations such as putting a "shutter" on DS's bedroom window (basically boarded up but decorative!), internal locks on every door using those star keys so same key for every door AND hiding the keys (a friend has hooks at the top of doors), reinforced panel behind radiator in his room, moved light switch outside his room, very little furniture or other stuff in his room as he would just drag it around and climb on it and jump off it.
I think a lot of it is sensory and just being plain inquisitive but not having appropriate language/understanding to limit it!
Have you got a little trampoline indoors? Also those exercise balls are good, trugging in shredded paper etc.
Mostly DS has grown out of a lot of the more dangerous stuff as he's got bigger but he is still likely to demolish the house with his bunny hopping etc. We still have to hide bubble bath and keep him out of the bathroom cupboard. He used to tip out coffee, sugar etc but seems to have stopped that.
Sorry this isn't more useful, maybe try a few substitute things like exercise ball but in the long run you prob just have to limit access to everything.

[InternationalGirl]

Sympathies and commiserations Coppertop. I totally understand - my dd is dynamite - excellent motor skills and severe language and communication delays.

We try to limit her access to stuff too. Like pens, felt pens etc - we have pictures of people, chickens, bunny rabbits on the walls and the lampshades in the house. Funny though it's not just scribble - it's detailed drawings and its hard to get pi**sed when the pictures are so cute.

She is a little monkey too - such a climber. Last week she found my nailpolish on the top shelf and did her fingernails AND her toenails - did a pretty good job too but got some nailpolish on the coffee table.

She is always eating too - and before you can blink she has climbed up on the kitchen bench and is helping herself to food in the cupboards. She is so independent she has to do everything for herself and doesn't let anyone help - this has been a serious communication problem at school.

So I can totally relate and I hope that with dd understanding more language and having better communication that things will get better and I hope it will get better for you too.

[coppertop]

Davros - Yes, we've got a mini-trampoline. It's in ds1's room but it's probably a good time to bring it back downstairs again. We put hooks at the top of the doors when ds1 was a toddler. The only problem is that when ds1 is at home we have to leave them off so that he can get through the doors. Ds1 still doesn't always realise that he has to actually say something if he needs help so I can't even tell him to just ask if he needs to get through the door to use the toilet etc. I'd thought about lowering the hooks but tbh anything that ds1 can reach ds2 can reach too. Hopefully bringing the trampoline downstairs again will help him to use up some of that energy.

IG - Your dd sounds so much like ds2! Ds2 also enjoys leaving his artwork everywhere. Some of it is the usual toddler scribble but he also draws little people and faces. I try to hide the pens but again it's ds1 who leaves them lying around when he's finished with them. If ds2 can't find a pen he will 'paint' with yoghurt instead. We also joke about how we could probably leave ds2 home alone for a week and he would be quite happy helping himself to food from the cupboards and fridge.

[Davros]

Well, you know what you're doing then but its obviously hard trying to set the house up for both of them, we only had DS to worry about and that was a pain! Don't know what else to suggest, you know I'm not the best at dealing with "flash points" !!!

[coppertop]

Davros - Thanks for the reminder about the mini-trampoline. It was just the kick up the backside I needed to drag the wretched thing back down again. Ds2 is in toddler heaven and has been so busy jumping and bouncing that I've actually managed to get some tidying up done.

Socci - I must admit that today even I've been smiling at the memory of ds2 sitting at the table with his 6 yoghurts all neatly lined up and just finishing off the last one.

[heartinthecountry]

CT - I don't have any constructive advice but really hoping you start having an easier time soon.

[Saker]

CT-

sorry you are having a bad time. You are always so positive and I think you are very entitled to a moan under these circumstances. Is it possible for you to get a break for a day or even a morning or something. Or even be the one who goes to the shops with Ds1 while Dh stays with Dh. Otherwise you get so cooped up at home.

glad the trampoline has helped a bit this morning.

[Davros]

CT, you are usually so positive Hope things are better today. "Its just a phase" said in ringing head teacher tones

[coppertop]

LOL at Headmistress Davros!

A much better day today. The novelty may wear off eventually but ds2 is much less hyper with the trampoline downstairs. It's also turning out to be a good distraction technique. This afternoon he was about to explode because of something so minor that I've even forgotten what it was. I said " jump?" and off he bounced with the meltdown forgotten.

Our portage worker came round this afternoon and just stared in amazement at ds2 bouncing up and down like a manic monkey. She also said that she still doesn't understand why ds2 doesn't have an official dx when pretty much anyone can see that he's on the spectrum.

The only downside to the trampoline is when ds1 comes home and also wants a turn. Can you imagine the turn-taking issues of 2 autistic under-5s?

We have made a new arrangement on Saturdays now so that dh goes out with ds1 first and then when he comes back I go out for a while by myself or with ds1. Bliss!

Thankyou all for listening to me moan. I'd forgotten how therapeutic it could be!

[Jimjams]

I missed this CT. You have the same sort of problems as we have with ds1- body and physical ability way ahead of language. It's a bloody nightmare. It sounds as if you may have the short flitty attention span to deal with as well.

ROFL @ the bubblebath down the toilet. Sorry I shouldn't but we had washing up liquid in the kettle (you can imagine).

Hope you're feeling better about it soon.

PS I do the same with our trampoline when ds1 is cross.

[TheRealMrsF]

sorry you feel so low...not used to reading your sadness.
I will mail u pricvately tomorrow afternoon/evening...i'm spending the morning wih my mum.
Look after yourselfxxx

[MadderDrFitzpatrick]

Did someone mention trampolines?

[coppertop]

LOL at MadderDoctorFitzpatrick!!

I can just imagine the scene when attempting to remove washing up liquid from the kettle. Yes, ds2 is still at the flitty stage atm. One of his IDP targets involves keeping him on task for longer. I'm hoping that this will improve a bit when he starts at pre-school in a few months.

MrsF - Good luck with the visit to your mum's.

[Davros]

I was wondering where MadDrF had got to after that MMR prog that other week
What's going to happen with pre-school CT, will he get extra support, will the staff "know" etc? Also, what's an IDP as opposed to IEP? I'm thinking develoment?????

[coppertop]

The Early Years Inclusion manager and the Area SENCO are arranging for him to have 1:1 at pre-school (touchwood!). The pre-school staff have been very honest and said that the chances of them managing ds2 without some support are tiny. It's the same pre-school that ds1 went to. The staff have also been on ASD courses in preparation.

Yep. The IDP is the Individual Development Plan - basically an IEP for children not old enough for pre-school. The targets are set by the SALT, the Psych, the OT, and the EYIS. Ds2 is following the scheme set up for children with complex communication difficulties.

For a minute there I was wondering if I was finally losing it and had posted as MDF without remembering it.

[Davros]

It sounds like everything is sorted then CT and at least the school staff know what to expect and are realistic without being negative. Yes, who is that new MadderDrF?????

[monica2]

Hi CT sorry you are having a hard time at the moment I hope you have had a better day today. Glad the trampoline is helping, we have also used a punch bag which can work just as well as the trampoline, it often avoids that whole turn taking (now timing to the second who has had the longest), you can get them quite cheaply in different kids novelty characters, it has reduced dd's agressive behaviour hugely.